The Sunflower Conversations

FGM/C Survivors with Huda Mohammed, Vavengers

Sun, 09 Aug 2026 01:00:00 +0000

Content warning: This podcast episode discusses female genital mutilation and cutting (FGM/C), including its physical, emotional, and psychological impacts. Some listeners may find this content distressing. Listener discretion is advised. If you have been affected by the issues discussed, please consider seeking support from a healthcare professional.

In this episode, Huda Mohammed, who is an FGM Specialist and Pelvic Health Midwife from the charity Vavengers, discusses the Impact of FGM on Women's Health.

Women who have undergone FGM often face a myriad of health complications that can affect them throughout their lives. We discuss:

Physical Pain: Chronic pain and discomfort during intercourse, menstrual cycles, and childbirth.
Psychological Trauma: Many women report feelings of trauma, anxiety, and depression related to their experiences with FGM.
Infections and Complications: Increased risk of urinary tract infections, complications during childbirth, and infertility issues.

For support:

Vavengers - UK
Action to End FGM/C - Global

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
If you enjoyed this podcast, please leave a rating and review.
Find out more about the Sunflower by visiting the website hdsunflower.com
Music by © Sandee Facy / Michael Saleta www.sandeefacy.com.au

FGM/C with Sema Gornall, Vavengers

Sun, 09 Aug 2026 01:00:00 +0000

We talk with Sema Gornell, the charity Vavenger's CEO, about one of the biggest misconceptions surrounding FGM/C: that it is a medical necessity. In reality, there are no health benefits to the practice; rather, it can lead to severe physical and psychological harm. Sema points out that the female genitalia is one of the most sensitive areas of the body, containing over 10,000 nerve endings. The removal or alteration of this area can result in lifelong complications, including chronic pain, reproductive issues, and mental health struggles.

We also challenge the myths that stop progress. FGM is not “just culture”, and it is not a private issue that communities are comfortable with. Sema explains how demand and misogynistic norms shape expectations of women’s bodies, and why men and boys must be champions if we want prevention to work.

For support:

Vavengers - UK
Action to End FGM/C - Global

Multiple Sclerosis with Yvette - Australia & New Zealand

Thu, 06 Aug 2026 05:00:00 +0000

In this episode of Sunflower Conversations, James Dunn speaks with Yvette O'Dowd, who first showed symptoms of multiple sclerosis (MS) at 32 years old and has now been living with the condition for over 30 years. An advocate and author of the children's book Granny Has Wobbly Legs, Yvette shares her experience of living with MS, exploring fatigue, brain fog, stigma, and the practical adjustments, including the Hidden Disabilities Sunflower, that help make everyday life more accessible.

• Early MS signs, diagnosis and living with uncertainty
• Hidden symptoms including fatigue, brain fog, numbness and heat sensitivity
• Managing energy through pacing and spoon theory
• The emotional impact of invisible disability and being misunderstood
• Treatment decisions, lifestyle changes and daily coping strategies
• Explaining MS to children through Granny Has Wobbly Legs
• Simple accessibility changes that make a meaningful difference
• How the Hidden Disabilities Sunflower supports understanding and confidence

Visit our website, Facebook, or Instagram for more resources.

Stutter With Vikesh - Australia & New Zealand

Tue, 30 Jun 2026 09:00:00 +0000

In this episode of Sunflower Conversations, James Dunn speaks with Vikesh Anand, TEDx speaker and founder of STUTTA (Australian Stuttering Association), about living with a stutter and advocating for greater awareness and acceptance.

• What stuttering is, including different types of speech blocks and covert vs overt stuttering
• The mental load of masking speech, including anxiety, shame and constant self-monitoring
• Finding community at 28 through a stuttering support group, shifting towards acceptance
• Moving into advocacy and creating spaces like “Speak Freely” through STUTTA
• The importance of patience and not finishing sentences for people who stutter
• How the Hidden Disabilities Sunflower supports confidence and awareness in daily life

Visit our website, Facebook, or Instagram for more resources.

Motor Neurone Disease MND / ALS with Pauline Matheson Marks, MND Association and Jon Machel

Sun, 21 Jun 2026 01:00:00 +0000

We talk about motor neurone disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS), with Pauline from the MND Association and Joff, who shares what diagnosis and day-to-day life really look like. We explore how symptoms show up, why support and research urgency matter, and how small acts of understanding can make public spaces safer and kinder.

What MND is and why symptoms vary so much
The long process of ruling out other conditions
Prevalence
Resilience and adapting to change
The helpful role of the Sunflower in preventing being misjudged

If you are concerned about any of the subjects discussed in the podcast, please follow up with your healthcare practitioner for support.

For support

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by © Sandee Facy / Michael Saleta www.sandeefacy.com.au

Bowel Cancer and Living with an Ostomy with Nicole Trimboli - Australia & New Zealand

Fri, 05 Jun 2026 00:00:00 +0000

In this episode of Sunflower Conversations, James Dunn speaks with Nicole Trimboli about surviving two cancers, living with a permanent stoma and ostomy bag, and rebuilding confidence when your body and life change fast.

• Hodgkin’s lymphoma as a young mum and the mental scars that can linger
• Daily life with an ostomy bag, diet planning and body image.
• Writing What a Shit Show as a guide, a story and a form of therapy
• Travelling with a hidden disability, airport security, toilets and the Sunflower lanyard
• The harm of judging who uses accessible toilets and why visibility is not proof

Purchase a copy of Nicole's book "What a Shit Show"

Visit our website, Facebook, or Instagram for more resources.

Understanding Schizophrenia with Alex Phillips, Mind in Camden

Sat, 23 May 2026 01:00:00 +0000

The topic for this episode is mental health and schizophrenia. If you are affected by anything we discuss, please follow up with your healthcare provider.

We talk with Alex Phillips from Mind in Camden about schizophrenia and hearing voices, focusing on lived experience rather than frightening labels. We explore how people can recover, how families can offer support, and how everyday compassion reduces stigma.

Hearing voices as an umbrella for different sensory experiences
Why some experiences can feel positive or meaningful
Living well and recovery without forcing voices to disappear
Stigma in society and responding with a compassionate human approach
How the Hidden Disability Sunflower can signal a need for patience

If you are concerned about any of the subjects discussed in the podcast, please follow up with your healthcare practitioner for support.

For support

Intervoice - International
National Hearing Voices Network - UK

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by © Sandee Facy / Michael Saleta www.sandeefacy.com.au

Early onset Alzheimer’s with Jay Reinstein, VOA Foundation

Sun, 10 May 2026 01:00:00 +0000

We talk with Jay Reinstein about his early-onset Alzheimer's diagnosis, from the first confusing moments at work to the fear, stigma, and family impact that followed. We also dig into what helps day-to-day, how advocacy restores purpose, and why practical support like the Sunflower lanyard can change a journey from panic to confidence.

Noticing early cognitive changes in a high-responsibility job and seeking assessment
Emotional shock of diagnosis, including anxiety, depression, and worry about being a burden
Rebuilding purpose through boards, projects, and staying socially connected
Daily adjustments
Hidden Disability Sunflower lanyard and how it improves airport support for non-visible disabilities

For support

If you are concerned about any of the subjects discussed in the podcast, please follow up with your healthcare practitioner for support.

Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Profound Hearing Loss – with Mel (Australia & New Zealand)

Sun, 03 May 2026 18:00:00 +0000

In this episode of Sunflower Conversations, James Dunn speaks with Mel Ogden about profound hearing loss alongside endometriosis, Hashimoto’s disease, and breast cancer, and how it's shaped her identity, work, and self-advocacy.

Mel shares her journey from childhood through to adulthood, navigating communication, disclosure, and shifting access needs across different environments.

Communication in daily life, including lip reading and the importance of captions
Learning to disclose access needs, moving from masking to self-advocacy, and why confidence isn’t always linear
The impact of chronic illness and cancer on identity, energy, and day-to-day life
Challenging assumptions like “you don’t sound deaf” and how these moments shape the experience of non-visible disability

Visit our website, Facebook, or Instagram for more resources.

Vitelliform Macular Dystrophy (Best Disease) with Fiona - Australia & New Zealand

Tue, 07 Apr 2026 03:00:00 +0000

In this first episode of Season 3, James Dunn returns as our new host, bringing thoughtful and engaging conversations to the forefront. He is joined by Fiona, an organisational design and HR leader with over 18 years’ experience, who shares her experience of living with vitelliform macular dystrophy (VMD), also known as Best disease, and how it has shaped her perspective on identity, accessibility, and inclusion.

Growing up with a childhood diagnosis and navigating the evolving impact of progressive vision loss
What progressive vision loss can look like in real life, why corrective lenses often cannot “fix” low vision, and the quiet internal question so many people carry: am I disabled enough to ask for help?
Why experimenting with free technology can be a powerful first step towards inclusion. Practical workplace accessibility tools, including screen readers, magnifiers, and read-aloud features
Creating more inclusive workplaces through awareness, flexibility, and thoughtful design

Visit our website, Facebook, or Instagram for more resources.

Autism - my life diagnosed with Aspergers with Alex Manners

Thu, 02 Apr 2026 01:00:00 +0000

We talk with Alex Manners, an autistic speaker and author. In this episode, Alex explains what autism feels like for him, from literal language and sensory stress to special interests, like football, that genuinely help him cope. We also explore how improved communication and practical inclusion tools, such as the Hidden Disabilities Sunflower, can make everyday life more accessible.

In this episode, we cover a lot from school to employment. Below are just some of the topics we cover:

Why Alex still uses the term Asperger's
Special interests and how football and the football programmes support Alex's emotional regulation
Why sarcasm, idioms, and vague questions cause real barriers
Sensory sensitivities like labels, sock seams, and ticking sounds
What autistic meltdowns are, how masking contributes, and what recovery feels like
The importance of routine

If you are concerned about any of the subjects discussed in the podcast, please follow up with your healthcare practitioner for support.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Multiple Sclerosis diagnosis to charity building Talks With MS

Sun, 15 Mar 2026 01:00:00 +0000

Terri Louise Brown, founder of Talks with MS joins us in this episode. We learn how to create a charity from scratch and discover the importance of community support for those living with multiple Sclerosis.

Terri has relapse-remitting spinal MS and shares why she feels the power of community is essential, and her journey from an online group to creating a registered charity. We explore the inclusive Empowerment Awards, the importance of supportive educators, the use of technology for good, and why the Sunflower lanyard is a quiet voice for invisible disabilities.

For support:

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your healthcare practitioner.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

AuDHD with Courtney Rosato – Australia & New Zealand

Mon, 02 Mar 2026 04:00:00 +0000

In this episode, Flic Manning chats with disability inclusion leader, Courtney Rosato, about her late diagnosis of Autism and ADHD, navigating diverse professional spaces, and how her lived experience informs systemic change.

Late diagnosis and its impact on personal and professional identity
Thriving in dynamic, fast-paced environments as a neurodivergent professional.
Challenging workplace misconceptions about capability and communication
Embedding proactive adjustments and neuroaffirming leadership
Leading systemic change through policy, education, and capacity building
Creating genuinely inclusive environments that benefit everyone

Visit our website, Facebook, or Instagram for more resources.

Palindromic Rheumatism, Comorbidities and Neurodivergence with Danielle Cudjoe Michalksi

Sun, 01 Feb 2026 01:00:00 +0000

Danielle is neurodivergent and lives with palindromic rheumatism, undifferentiated connective tissue disorder, endometriosis, and adenomyosis.

We hear how her conditions intersect and why comorbidities complicate care. Danielle explains fascia and its effects on her body and organs. She also clarifies what palindromic rheumatism is: during flare-ups, pain moves around the body in episodes lasting hours or months, and a defining feature is the absence of joint damage, which often delays diagnosis.

Danielle's mental health has also been affected, especially after serious problems like blood clots and lung infection.

The conversation includes practical tools, guidance on workplace flexibility, and highlights the supportive power of the Sunflower community.

For support:

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your healthcare practitioner.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

POTS and ME/CFS with James - Australia and New Zealand

Mon, 01 Dec 2025 05:00:00 +0000

In this episode, Flic Manning chats with sunflower advocate, James Dunn on sudden onset of Postural Orthostatic Tachycardia Syndrome (POTS) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the long road to diagnosis, and how he rebuilt identity and purpose after stepping away from a legal career.

• Energy budgeting and daily structure
• Identity loss after leaving work and values reframing
• Navigating public spaces with a hidden disability
• Travel barriers, queues and access to seating
• Workplace culture shift from proof to trust
• Simple adjustments that help everyone

Visit our website, Facebook, or Instagram for more resources.

FND with Simone Round

Sun, 30 Nov 2025 01:00:00 +0000

Simone Round shares how a hand tremor evolved into a complex FND diagnosis, now consisting of tics, chronic migraines, non‑epileptic seizures, and the reality of becoming an ambulant wheelchair user. In this episode, Simone talks us through her journey from an active lifestyle and career, working over 70 hours a week, to the steps she now takes to support her mental health and wellbeing. She explains how she now takes pleasure in a much slower pace of life, mindfulness and connection with people who also live with chronic illness.

Simone also describes the differences between carers and PAs and how her independence feels restored since having the aid of one.

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your healthcare practitioner.

For support:

Visit your Healthcare practitioner
FND Hope International
FND Hope UK
FND Action UK
FND Ireland
FND Matters Northern Ireland
FND Hope Canada & USA Facebook support page

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Type 2 Diabetes with Ashwin Soni

Fri, 14 Nov 2025 01:00:00 +0000

Ashwin Soni joins the Sunflower Conversations to discuss Type 2 diabetes, which began to affect him four years ago.

We learn about the symptoms Ashwin experienced and the changes he has had to make to manage the condition effectively.

Also discussed are the differences between type 1 and type 2 diabetes, providing a better understanding and greater awareness of what to look out for to seek a diagnosis.

Whether you're supporting a loved one or just trying to refine your routine, you'll find grounded advice and hopeful takeaways in this episode, including accepting the diagnosis, learning the basics, and building repeatable habits to enjoy a long and fulfilling life.

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your healthcare practitioner.

For support:

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

AuDHD with Madeleine - Australia and New Zealand

Tue, 04 Nov 2025 01:00:00 +0000

Flic Manning chats with Madeleine Jaine Lobsey about Autism and ADHD, and how we can move from deficit thinking to joyful, neuroinclusive design across events and workplaces.

They discuss:
• Finding relief and reframing after an autism and ADHD diagnosis
• Honouring personal needs as part of everyday life
• Challenging common myths in leadership and creative roles
• How lived experience helps shape inclusive cultures
• Practical ways leaders can make inclusion real

Visit our website, Facebook, or Instagram for more resources.

Mental Health with Kelly Winstanley, Mental Heath Matters

Fri, 10 Oct 2025 01:00:00 +0000

Content warning: In this episode, we are talking about the topic of mental health and refer to self-harm and suicide. If any of the conversation causes you distress and you need to speak to someone, please consider contacting a family member or friend for additional support. However, if you need professional help, please contact NHS 111 option 2 (in the UK) or your region’s emergency response number, or healthcare practitioner.

Kelly Winstanley, the National Clinical Lead from the charity Mental Health Matters, joins us on this episode to explain the difference between mental wellbeing and poor mental health. At some point, everyone will experience poor mental health, which is why it is so important to talk about it to reduce the associated shame and stigma. Kelly provides us with some indicators to look out for, enabling us to spot changes early, seek help, and respond with calm, practical steps.

“…if people are listening find themselves experiencing symptoms or feel they’re struggling with their mental health or maybe they recognise that in other people, their family their friends or work colleagues, it’s really important to seek some help. See their GP, as soon as possible, again the earlier they treat it the better, but everyone different and these conditions can affect people in different ways.”

For support:

Visit your Healthcare practitioner
Call NHS 111, option 2 - UK
Zero Suicide Alliance - UK
Hub of Hope - UK
Mental Health Helplines - USA
Mental Health Support - Canada
Mental Health Support - Ireland

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Autism with Nicole - Australia and New Zealand

Mon, 06 Oct 2025 01:00:00 +0000

In this episode, Flic Manning chats with inclusion strategist Nicole Marshall on late autism diagnosis, unmasking, and the simple changes that make work humane and effective.

• Self-discovery through adult autism diagnosis and identity work
• The cost of masking and energy management
• Common workplace misconceptions about neurodivergence
• Lessons from teaching to inclusion strategy
• Inclusion as good business and good practice

Visit our website, Facebook, or Instagram for more resources.

Living with an Ostomy, with Keely Cat-Wells and Nate Hadlock, UOAA

Sat, 04 Oct 2025 01:00:00 +0000

Nate Hadlock and Keely Cat-Wells, advocates from the United Ostomy Associations of America, join us to address common questions and dispel myths and the stigma about living with an ostomy.

Millions of people worldwide have a stoma, yet there is a significant lack of knowledge and awareness about ostomies and the life-saving treatment they provide.

Sharing their own journeys as ostomates, we discuss:

Explanation of ostomy terminology, including different types: colostomy, ileostomy, urostomy and loop ileostomy
Common reasons people need ostomies
Daily life with an ostomy: emptying the bag, hygiene considerations, and travel preparations
Myth-busting: hygiene, activity, relationships

Nate and Keely share their own experiences with the psychological and emotional journey of adapting to life with an ostomy and dealing with public perception.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

Support

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Hearing Loss with Lidia Best, European Federation of Hard of Hearing People

Sat, 27 Sep 2025 01:00:00 +0000

Lydia Best, President of the European Federation of Hard of Hearing People (EFHOH), shares her personal journey with hearing loss and explains the barriers faced by the Deaf and hard-of-hearing community. We discuss the emotional impact of hearing loss, technological solutions like cochlear implants, and practical ways to create more inclusive communication environments.

Lidia explains what accessibility challenges exisit in various settings and explores what businesses and individuals can do to support those living with hearing loss and deafness.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

Support

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Dementia with Paul Hoskins and Tim Wilkins, Alzheimer's Society

Sun, 21 Sep 2025 01:00:00 +0000

Tim Wilkins from the Alzheimer's Society and Paul Hoskins join us to discuss dementia.
The stigma and misconceptions around dementia often paint a bleak picture of life after diagnosis. Paul has a different story to tell as he is living with frontotemporal dementia and Alzheimer's.

"Some days can be very hard. Some days are a lot easier," Paul explains, offering a glimpse into the reality of living with dementia. Far from withdrawing from life, Paul has embraced new activities since his diagnosis – from cricket and bowling to tapestry clubs and community involvement. His story challenges the notion that a dementia diagnosis means the end of an active, engaged life.

Tim explained that dementia is not simply one condition, but rather an umbrella term for symptoms caused by different diseases that affect the brain—emphasising that "dementia is not a natural part of ageing" – a crucial misconception that needs addressing.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

Support

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Post-Concussion Syndrome with Catherine - Australia and New Zealand

Mon, 01 Sep 2025 00:00:00 +0000

In this episode, Flic Manning chats with Catherine Hanna, a proud Sunflower and road safety advocate. Catherine shares her journey with post-concussion syndrome, the misconceptions surrounding an invisible brain injury, and how writing poetry has helped her process trauma and rebuild her identity.

• Post-concussion syndrome can occur without hitting your head or losing consciousness

• Brain injuries don't always show up on CT scans as damage can be at a cellular level

• The "mild" in mild traumatic brain injury refers to severity classification, not symptom impact

• Catherine manages her condition by wearing earplugs, planning rest breaks, and avoiding overstimulating environments

• The Sunflower lanyard helps Catherine carry earplugs and indicate her hidden disability

Visit our website, Facebook, or Instagram for more resources.

Check out Catherine Hannah Poetry here

ME / CFS with Hollie Christian Brookes, Yawn

Sun, 31 Aug 2025 10:00:00 +0000

This episode was recorded on Instagram Live.

Hollie Christian Brooks joined us to discuss her new play "Yawn: A Chronically Fatigued Play", which draws from her personal experience with ME/CFS to educate audiences about non-visible disabilities and create new connections with the community.

We discuss everything, from symptoms and periods to self-discovery and the power of the Sunflower.

ME/CFS often develops following viral infections like glandular fever, with Hollie’s diagnosis coming after years of recurring symptoms.
The fatigue associated with ME/CFS differs from normal tiredness in that it cannot be alleviated by sleep and often includes flu-like symptoms, pain, and cognitive difficulties.
Hollie created "Yawn" as both a personal healing journey and a way to connect with others who understand the isolation of chronic illness.

"Yawn" is designed to be accessible and inclusive, with concession tickets available for anyone who self-identifies as having a disability.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

You can connect with Hollie on Instagram @yawn_play and find links to purchase tickets in her bio.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Chronic illness with with Tasha Sorhaindo, Chronically Marvellous

Sun, 24 Aug 2025 01:00:00 +0000

Tasha Sorhaindo shares her journey living with multiple chronic health conditions and founding her charity, Chronically Marvellous, that supports individuals with non-visible disabilities.

Tasha is autistic and lives with systemic lupus, dilated cardiomyopathy leading to heart failure, Ehlers-Danlos Syndrome, arthritis and osteoporosis. After being able to run marathons and becoming gravely ill with only two weeks to live, Tasha decided to set up Chronically Marvellous to support others in a similar position with support groups that carers can also attend, counselling services and the provision of wheelchairs and electric scooters, as she understands the feeling of isolation.

As a mum, her children are her priority, especially as they also have non-visible disabilities, including autism and the genetic long QT wave syndrome. Balancing being there for them, with chronic pain, fatigue, and breathing difficulties, is hard work, but it also gives her true insight into what services to offer.

Support

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please rate, review and share it to increase awareness and understanding of non-visible disabilities.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

ADHD and Hearing Loss with Ant - Australia and New Zealand

Sun, 03 Aug 2025 03:00:00 +0000

Ant Raje shares his journey of living with ADHD and deafness in one ear, exploring how they impact focus, communication, and identity. He challenges common misconceptions, reflects on the power of empathy, and shares why creating spaces where people feel seen and heard matters more than having all the answers.

• Living with both ADHD and hearing loss creates unique challenges as paying attention (needed for hearing) is complicated by ADHD-related focus issues
• Common misconceptions about ADHD include assuming someone isn't listening when they're doodling or not making eye contact
• People with ADHD and hearing disabilities can make excellent leaders due to their strong empathy and creative thinking abilities
• Clear written instructions benefit both people with disabilities and those from diverse cultural backgrounds
• Creating safe spaces where people feel seen and heard is often more important than solving problems for them
• Two simple ways to create a more accessible world: include disabled people in decision-making processes and practice basic kindness

Visit our website or find us on Facebook and Instagram

PIP with Murray Goulder

Sun, 06 Jul 2025 01:00:00 +0000

Murray Golder shares his experience with epilepsy and Personal Independence Payment (PIP), highlighting how this support enables him to continue working full-time while managing his condition safely.

Murray explains that his absence seizures, which can cause him to lose awareness for 20 seconds to 2 minutes, can place him in danger as he isn’t conscious of what he is doing. And more recently, as a consequence of the medication, Murray's memory function has deteriorated rapidly.

PIP provides essential support towards Murray's costly transport needs and medication expenses

If you are experiencing any issues discussed in this podcast, please get in touch with your healthcare practitioner.

Support

DWP PIP

PIPP S is a Sunflower member, specialising in providing legal support and online advice for tribunal appeals for PIP, ADP, ESA, and UC Claims.

Cerebral Palsy and BPD with Laura - Australia and New Zealand

Tue, 01 Jul 2025 00:00:00 +0000

Laura Pedernuzzo shares her experiences living with multiple disabilities and provides invaluable insights into disability advocacy. She explains how both visible and invisible disabilities shape her daily interactions with the world, highlighting the unique challenges of each.

• Living with cerebral palsy creates physical barriers, but the fatigue it causes is often misunderstood
• People with borderline personality disorder are often mischaracterised as manipulative when they're simply trying to cope with intense emotions.
• The concept of "crip time" acknowledges that disabled people don't have "the same 24 hours" as non-disabled people.
• Approximately 44% of Australians have low literacy levels, making accessible communication essential.
• Easy Read uses simple language and images to make information accessible to people with low literacy.
• Continued COVID-19 precautions are vital for creating truly inclusive spaces
• Small actions like acknowledging access needs show disabled people they matter and their needs aren't burdens but rights.

Advocating for the Sunflower with Andrea Cartensen

Fri, 13 Jun 2025 08:00:00 +0000

Andrea Carstensen, a double Master's student at the London School of Economics and Political Science (LSE) and Sunflower Friend.

Andrea discovered the Sunflower at Gatwick Airport after moving from the US to the UK for university. As a young person living with non-visible chronic health conditions, she shares her journey from Sunflower lanyard user to advocate. Through high-level UN advocacy and campus policy reform, Andrea has successfully championed the adoption of the Hidden Disabilities Sunflower at LSE through the Student Union, ensuring a legacy of inclusivity that extends beyond her time at the university.

If you are experiencing any issues discussed in this podcast, please get in touch with your healthcare practitioner.

For information:

Learn more about the Sunflower hdsunflower.com

Stargardt Disease with Erin - Australia and New Zealand

Wed, 28 May 2025 00:00:00 +0000

Erin Philpott shares her journey with Stargardt disease, revealing how she navigated diagnosis as a teenager and now balances motherhood while advocating for invisible disabilities in the workplace and beyond.
• Erin faces significant daily challenges with transportation as a legally blind mother to a five-year-old
• Often encounters misconceptions as she doesn't "look blind" without using a cane or guide dog
• Erin chairs an employee-led committee advocating for disability, accessibility and inclusion
• Erin emphasises that accessibility benefits everyone, not just people with disabilities
• Advocates for building accessibility into initial designs rather than adding as afterthoughts
• Challenges the stigma that disability means limitation: "Make it accessible and we'll come in droves"

Please keep the conversation going via our Website, on Facebook, or on Instagram.

Ankylosing Spondylitis with Sean Ewert and Manny Caro, Spondylitis Association of America

Sun, 25 May 2025 01:00:00 +0000

We welcome Sean Ewart and Manny Caro from the Spondylitis Association of America to provide an overview of Spondyloarthritis (SpA), a family of closely related inflammatory diseases that affect millions worldwide yet remain significantly under-recognised and diagnosed. Despite affecting more people than rheumatoid arthritis, multiple sclerosis, and ALS combined, SpA struggles with awareness.

The primary disease in this family is ankylosing spondylitis (AS), also known as axial spondyloarthritis. This condition primarily affects the spine but can impact other joints throughout the body. Primary symptoms include inflammatory back pain, stiffness, reduced flexibility, fatigue, and sometimes spinal fusion.

If you are experiencing any issues discussed in this podcast, please get in touch with your healthcare practitioner.

For support and information:

Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please rate, review and share it to increase awareness and understanding of non-visible disabilities.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Multiple Sclerosis with Terri Louise Brown, Talks With MS

Sun, 18 May 2025 01:00:00 +0000

Terri Louise Brown has Relapsing Remitting Multiple Sclerosis (MS), experiencing frequent relapses and daily pain. In this conversation, Terri shares her journey from MS diagnosis at 27 to founding the charity Talks With MS. The charity provides community support for those living with multiple sclerosis.

Cultural attitudes in BAME communities can create barriers to seeking medical help for chronic conditions, which is why Terri is committed to being the voice for the voiceless and encouraging people to seek medical and emotional support.

We discuss how her personal experiences as a Black woman navigating disability have shaped her passionate advocacy for greater accessibility, representation, and understanding of non-visible disabilities.

If you are experiencing any issues discussed in this podcast, please get in touch with your healthcare practitioner.

For support and information:

Stroke with Saran - Australia and New Zealand

Fri, 02 May 2025 00:00:00 +0000

Saran Chamberlain shares her journey as a young stroke survivor, from experiencing a life-changing event at 38 to becoming a national advocate for the stroke community.

• Initially misdiagnosed as a migraine, the stroke left her entire left side paralysed with no sensation
• Saran discusses the challenges of identity shift and the unseen deficits like fatigue, depression, and sensory overload
• Highlights the isolation younger stroke survivors often face in healthcare and rehabilitation settings
• Saran works on research co-design, speaks openly about stigma, and supports other survivors as a mentor.
• Emphasises the importance of meaningful inclusion of people with lived experience in research using "nothing about us without us" principles
• Believes in taking small wins and finding hope in the lifelong journey of post-stroke life

Visit our website or find us on Facebook and Instagram

Short Bowel Syndrome, feeding tubes and ostomy bag with Shaylee Raye Hunter

Wed, 09 Apr 2025 09:00:00 +0000

Join us as we welcome Shaylee Raye Hunter, Miss Petite Utah, who shares her journey as an advocate for women's rights and disability visibility. Shaylee opens up about her personal lived experiences with chronic intestinal pseudo-obstruction (CIPO), gastroparesis, and short bowel syndrome. In an open discussion, she shares how she manages her health conditions with medical interventions, such as a feeding tube and TPN, providing a unique glimpse into her life and the lifeline she depends on daily to receive the nutrients essential to life.

We learn about the challenges Shaylee faced at school due to the assumptions made by other students about her health, as well as the subsequent difficulties she encountered in dating and the workplace.

Shaylee is passionate about advocating for disability visibility through her pageant platform.

If you are experiencing any issues discussed in this podcast, please get in touch with your healthcare practitioner.

Autoimmune Diseases and Neurodivergence with Téa - Australia and New Zealand

Thu, 03 Apr 2025 22:00:00 +0000

Téa Runback shares her personal journey living with multiple invisible disabilities, including autism, ADHD, and a collection of autoimmune conditions, while highlighting the barriers faced in healthcare and employment settings.

Autoimmune Diseases with Kate Middleton, The Wren Project - Podcasthon episode

Sun, 16 Mar 2025 01:00:00 +0000

Kate Middleton, CEO of The Wren Project, joins us for a special edition as part of the Podcasthon, which seeks to spotlight thousands of charities.

In this episode, Kate shares her personal journey with multiple autoimmune diseases and explains how the body attacks itself instead of viruses. The Wren Project pairs individuals with dedicated volunteers for up to six months of regular support. It provides vital mental health support through dedicated listening services to those living with these often non-invisible conditions, giving an essential lifeline to address and support feelings of isolation and loneliness.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support and information:

The Wren Project

Discover more episodes as part of Podcasthon:

Podcasthon

The Empowerment Awards and Multiple Sclerosis with Elisha Samuels

Sun, 09 Mar 2025 01:00:00 +0000

In this episode, we chat with Elisha Samuels, who recently won Hidden Disability Personality of the Year at The Empowerment Awards by Talks with MS. The award was sponsored by Hidden Disabilities Sunflower and presented by our podcast host, Chantal.

Elisha shares her own unique experiences of living with multiple sclerosis, discussing her challenges, the importance of a supportive workplace, societal perceptions of living with a non-visible disability, and the Sunflower's value in making the invisible visible and its contribution to evoking dialogue about inclusivity and awareness.

Elisha's poem, "Burnout" gives an insight to the challenges she has overcome and why she feels she received the nomination for the award.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support:

Multiple invisible disabilities with Zoe Simmons - Australia and New Zealand

Sat, 01 Mar 2025 01:00:00 +0000

“...we really need more representation of this so we can smash these attitudes for all disabilities.”

Peta Hooke interviews Zoe, a disabled journalist, copyright, author and public speaker. Zoe is a passionate advocate fighting against ableism and removing the stigma. She discusses attitudinal barriers and how someone may have a disability that is not visible, but their reactions are, and we should pay attention to this.

Although Zoe is yet to receive appropriate support wearing the Sunflower, she believes it can benefit many people like her with greater public awareness.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.

A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.

If you want to share your experience, get in touch with us by emailing us here.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Epidermolysis Bullosa with Karen Thackray, DEBRA UK and Lisa Irvine

Sun, 23 Feb 2025 01:00:00 +0000

Karen Thackray from DEBRA UK and Lisa Irvine joined us to discuss the rare skin condition epidermolysis bullosa (EB), sometimes known as butterfly skin.

Lisa and her daughter live with EB and offer first-hand insights into the genetic skin condition that causes painful blisters. Karen breaks down the four main types of EB and their varying impacts. Through our conversation, we aim to raise awareness and foster a deeper understanding of EB as a dynamic disability that causes severe pain, as well as the emotional toll of constant adaptation to manage and care for the skin and judgement of strangers.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support:

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

https://www.facebook.com/hiddendisabilitiessunflower/

https://www.instagram.com/sunflowerlanyardscheme/?hl=en

https://www.youtube.com/@hiddendisabilitiessunflower

https://www.linkedin.com/company/hidden-disabilities

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Leprosy with Chris Stratta, The Leprosy Mission

Sun, 02 Feb 2025 01:00:00 +0000

Chris Stratta from The Leprosy Missions is our guest this week on the podcast to educate us about how Leprosy, a curable disease often associated with stigma, affects thousands globally today. This episode explores its symptoms, the challenges those diagnosed face, and the critical role of education in combatting fear and discrimination.

We discuss the importance of early detection and treatment to eradicate Leprosy, which is found in countries with poor sanitation and nutrition.

Education is crucial in fostering kind and supportive communities so people affected by leprosy can live full lives.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support and to get involved:

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Autism with Amelia Wright - Australia and New Zealand

Sat, 01 Feb 2025 01:00:00 +0000

“I think it's important for people to realise that disabled people can be successful.”

Peta Hooke interviews Amelia, a queer, autistic and very opinionated social justice advocate (her words).

Amelia combines the professional expertise as a social worker with her personal understanding of the intricacies of living with a non-obvious disability and talks about some of the unique challenges that often go unnoticed. Amelia demonstrates how someone can use the Sunflower to be seen and validated without explaining.

For more information about Autism, please visit https://hdsunflower.com/au/insights/post/autism

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

The LEGO Group collaboration with Lauren von Stackelberg

Sun, 22 Dec 2024 01:00:00 +0000

Join us as we welcome Lauren von Stackelberg, the Chief Diversity & Inclusion Officer at the LEGO Group, to the podcast to learn more about the new Sunflower customisable minifigures and LEGO sets featuring the official Sunflower.

Lauren leads us through the iconic toy brand’s disability inclusion journey that started in 2011 beginning with a LEGO DUPLO character in a wheelchair, expanding over time to include the first Minifigure in a wheelchair, hearing aids, cochlear implants, a Minifigure with visual impairment and a guide dog, Minifigures with prosthetics, stoma bags, innovative products like the LEGO Braille bricks, and today, the addition of the Hidden Disabilities Sunflower lanyard.

We hear why the Hidden Disabilities Sunflower is essential to the company’s progressive approach to supporting disability inclusion and reducing stigma and how it goes beyond individual toys but also includes the design of the sets to accommodate the characters within it.

For more information:

The LEGO Group

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Airport Travel with Michael Connolly, Skywise Solutions

Sun, 15 Dec 2024 01:00:00 +0000

This episode was recorded at Rise4Disability.

Experience the world of accessible travel in aviation with Michael Connolly as we welcome him to the Sunflower Conversations podcast at the Rise4Disability event in Milton Keynes. Michael shares his vast knowledge of the hurdles faced by travellers with disabilities and how innovations like the Hidden Disabilities Sunflower are making a difference.

The challenges and barriers faced by disabled passengers are varied. We discuss the varied levels of airport assistance available and how to access it to ensure a safe and accessible journey.

We also hear about the Civil Aviation Authority's role in maintaining standards and the need for every aircraft to have onboard wheelchairs to ensure no passenger is left without support.

Michael explains the importance of the Sunflower's discreet ability to indicate that support is required. We highlight how the lanyard empowers individuals, allowing them to travel independently while maintaining privacy.

Please contact your healthcare practitioner if you are experiencing any issues discussed in this podcast.

For support

Skywise Solutions

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Multiple Sclerosis (MS) with Fran White - Australia and New Zealand

Sun, 01 Dec 2024 01:00:00 +0000

“…the mental, challenges are as great as perhaps the physical ones.“

Peta Hooke interviews Fran, an ambassador for MS Australia. Fran chats about confronting her late diagnosis of multiple sclerosis (MS) and some of the individualised challenges that people with MS face, including heat sensitivity, fatigue, visual impairment and mobility issues.

MS is the most common acquired chronic neurological disease and, in Australia, affects three times more women than men. In MS, the body’s immune system mistakenly attacks and damages the fatty material – called myelin – around the nerves. This results in a range of symptoms, but no two people experience MS in the same way.

For more information about MS, please visit https://hdsunflower.com/au/insights/post/multiple-sclerosis-ms

For support please visit https://www.msaustralia.org.au/ or https://www.msplus.org.au/

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

Cerebral Palsy and Mental Health with Eva Abley

Sun, 24 Nov 2024 11:00:00 +0000

This podcast was recorded as an Instagram Live.

Meet Eva Abley, the unstoppable force behind the memoir "The Good, The Bad and The Wobbly." At only 16 years old, Eva takes us on a journey through her life, from managing her symptoms of cerebral palsy to her experiences in the educational system and the highs of performing on stage.

Eva is honest in our chat about her life, which hasn't been plain sailing. Through harmful attitudinal experiences at school with friendship groups and teachers, Eva's mental health has been severely affected. Now Eva has coping strategies and uses her experiences to advocate for disability awareness and acceptance through her schools programme, Spread the Kindness. At college, Eva is studying Health and Social Care.

Eva's story is about growth, acceptance, and the power of being true to oneself. It reminds us of the impact we can have when we stand together for inclusivity.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

The Good, The Bad and The Wobbly book by Eva Abley, all proceeds go to Birmingham Children's Hospital
Spread the Kindness school programme by Eva Abley
CP Teens
Scope CP Network 18 years old and over.
Cerebral Palsy Adult Advice UK

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Functional Neurological Disorder and Fibromyalgia with Gabrielle Hine

Sun, 03 Nov 2024 14:00:00 +0000

Gabrielle Hine shares her life-altering journey with Functional Neurological Disorder (FND) and fibromyalgia. Gabby experiences symptoms such as paralysis, non-epileptic seizures and blindness daily. Gabby paints a vivid picture of how these misfired signals within her nervous system have reshaped her life, leading to a cascade of challenges like anxiety and not being able to work.

We talk about the societal misconceptions that often accompany non-visible disabilities. From the frustration of slurred speech to the heartbreak of having to step away from a career, our conversation delves into the complexities of living with FND and fibromyalgia. We also touch on the unique ways these conditions manifest in individuals, emphasising the importance of personalising support and understanding.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Autism with Ashlee Law - Australia and New Zealand

Fri, 01 Nov 2024 01:00:00 +0000

“People say to me things like, oh, you can't be autistic. That's not right. You make eye contact, or you do public speaking for your job… I didn't disclose it until I was forced to due to work issues.”

Peta Hooke interviews Ashlee, an autistic woman and a mother of three amazing children who are also autistic. Ashlee talks about coping with unexpected change, the challenges of invisibility and the pressure to disclose. She also talks about how wearing the Sunflower can provide comfort and a feeling of security to people with Autism and would like to see more of it in Shopping environments.

Cerebral Palsy with Richard Luke, Scope and Karen Watson, Cerebral Palsy Adult Services UK

Sun, 13 Oct 2024 01:00:00 +0000

Richard Luke from Scope and Karen Watson from Cerebral Palsy (CP) Adult Advice Service UK joined the podcast to answer questions from the Sunflower community about CP.

Cerebral Palsy develops before, during or soon after birth, and in this conversation, we discuss the fundamental issue of NHS care after childhood, leaving a gaping void in ongoing support. The episode also uncovers why CP, a complex condition, remains shrouded in misconceptions.

Richard and Karen generously share personal stories, shattering stereotypes and shedding light on the real experience of living with CP and examine the gaps in healthcare, education, and employment, we also discuss the socioeconomic disparities within the CP community.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Tourette's Syndrome and Mental Health with Joshua Fletcher - Australia and New Zealand

Tue, 01 Oct 2024 01:00:00 +0000

“You have mental health challenges, but you are still who you are.”

Peta Hooke interviews Joshua about Mental Health and Tourette’s Syndrome. Joshua discusses challenges in public places that cause severe anxiety, and how the Sunflower can help. Joshua would like to see stronger support across essential services such as public transport networks and supermarkets.

Mental health is a state of mental well-being that enables people to cope with the stresses of life, realize their abilities, learn well and work well, and contribute to their community. If you’re going through a hard time right now, the Beyond Blue Support Service is available 24/7 for brief counselling. Call a counsellor on 1300 22 4636 or chat to a counsellor online here www.beyondblue.org.au

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

Employment - Empowering Disabled Freelancers with Lydia Wilkins

Sun, 08 Sep 2024 01:00:00 +0000

Unlock the secrets to thriving as a self-employed individual with disabilities in our latest episode featuring Lydia Wilkins, a freelance journalist and editor at Disability Review magazine. Hear Lydia's compelling personal journey as she navigates the workforce as an autistic person living with long COVID. We tackle the significant disability employment gap in the UK and explore why traditional nine-to-five office jobs often fall short in accessibility, making a strong case for the financial and personal benefits of freelancing.

Discover the essential support systems available for freelancers with disabilities, including Personal Independence Payment (PIP), and how they are crucial in managing day-to-day needs.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Pompe Disease with Hele Borup - Australia and New Zealand

Sun, 01 Sep 2024 01:00:00 +0000

“People judge before they stand back and think, you know, there might be another reason for, for a person behaving the way that they do.”

Peta Hooke interviews Helle about Pome disease and some of the everyday challenges Helle faces from getting dressed, to speaking to getting around.

Pompe disease is a rare, inherited, and without treatment, often fatal muscular disorder. Pompe Disease is caused by a deficiency or total lack of the enzyme acid alpha glucosidase. This enzyme is responsible for breaking down excess glycogen which normally accumulates in the muscles.

For more information about Pompe disease, please visit https://australianpompe.org.au/find-out-more/

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

Cushing's Syndrome with Gretchen Jordan

Sun, 04 Aug 2024 01:00:00 +0000

Discover the vital role of the pituitary gland and its impact on our health with Gretchen Jordan, Associate Director of the Cushing Support and Research Foundation. Gretchen shares her compelling personal journey with Cushing's disease from diagnosis to advocacy. This episode uncovers the critical functions of cortisol and the often-overlooked symptoms of this rare condition, emphasising the need for greater awareness and early diagnosis.

Learn how non-specific symptoms like weight gain, high blood pressure, and emotional instability complicate the diagnosis of Cushing's disease. We discuss the importance of recognising these symptoms early to improve quality of life and reduce the risk of severe complications.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Autism and ADHD with Isabella Fantastia - Australia and New Zealand

Thu, 01 Aug 2024 01:00:00 +0000

“My brain is having to put in a lot of coping mechanisms to be able to just be in that space or in that place.”

Peta Hooke interviews Isabella about intersectionality in youth, disability and mental health. Isabella (Belle) identifies as a neurodivergent (autistic & ADHD) Greek (CALD) queer/asexual empath with binge eating disorder (BED), learning and psychosocial (permanent & ongoing anxiety & depression) disabilities.

Belle chats about challenges caused by general misunderstandings, and how the Sunflower can help. Belle is a passionate advocate and has a blog well worth subscribing to, https://www.divergents.info/publications.

Mental Health: If you’re going through a hard time right now, the Beyond Blue Support Service is available 24/7 for brief counselling. Call a counsellor on 1300 22 4636 or chat to a counsellor online here www.beyondblue.org.au

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

Tourette's Syndrome with Leighton, Uncle Tics - Australia and New Zealand

Mon, 29 Jul 2024 15:00:00 +0000

Language warning: Strong language used in this podcast.

Content Warning: Please be advised that this episode contains strong language and discusses suicide.

Tourette Syndrome (Tourette's) is a neurological condition that causes individuals to make involuntary vocal noises and movements called tics. Swearing or saying inappropriate things only affects 10% of people with Tourette's. For more information about Tourette's Syndrome, please visit here.

"...If you don't get out and build your bridge yourself, you'll never get anywhere..."

This month, our Sunflower Conversations Podcaster in Australia and New Zealand, Peta Hooke, interviews Leighton (Uncle Tics) from New Zealand about Tourette's Syndrome. Leighton discusses his experience with public opinion, employment opportunities and having the courage to try new things.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.

If you want to share your experience, get in touch with us by emailing us here.

Schizoaffective disorder with Alana - Australia and New Zealand

Sun, 30 Jun 2024 01:00:00 +0000

This month, our Sunflower Conversations Podcaster in Australia and New Zealand, Peta Hooke, interviews Alana talking about schizoaffective disorder, a combination of schizophrenia and bipolar disorder. Alana discusses her experience with hallucinations and multi-sensory delusion, and how the Sunflower can help in employment and education environments.

Schizoaffective disorder is a combination of two mental illnesses – schizophrenia and a mood disorder. The main types of associated mood disorder include bipolar disorder (characterised by manic episodes or an alternation of manic and depressive episodes) and unipolar disorder (characterised by depressive episodes). For more information, please visit here.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

If you want to share your experience, get in touch with us by emailing us here.

Acromegaly with Martin Cornally

Sun, 23 Jun 2024 01:00:00 +0000

Martin Cornally shares his experience of the rare pituitary disease called acromegaly. Hear firsthand how a pituitary tumour led to excessive production of growth hormone, causing severe physical changes, including osteoarthritis. Despite undergoing two surgeries, Martin continues to fight this chronic and life-long condition, shedding light on the crucial need for early diagnosis and increased awareness among medical professionals.

Explore the differences between acromegaly and gigantism, conditions that, though related, manifest at different stages of life. We discuss this rare disease's emotional, physical, and financial impacts, highlighting the importance of recognising subtle symptoms early on. Martin's symptoms include severe headaches, significant weight gain, and enlarged organs, which underlines the challenging journey of living with acromegaly and the importance of timely, accurate diagnoses.

In this episode, we also delve into the broader challenges of invisible disabilities, and co-host Scott shares how he has coped with having multiple brain aneurysms.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Hosted by Chantal Boyle and Scott Casson-Rennie, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

PTSD and CPTSD with Rachel Bilksi, PTSD UK

Sun, 16 Jun 2024 01:00:00 +0000

Our guest is Rachel Bilski from the charity PTSD UK. PTSD stands for Post Traumatic Stress Disorder and is typically associated with veterans. However, it isn't only veterans who can develop it – And Complex Post Traumatic Stress Disorder, CPTSD, is less well known and, therefore, can take longer to diagnose.

Rachel's lived experiences of CPTSD contribute to her work as a lecturer and supervisor for the Minded Institute for Yoga Therapy Training Institute. We put your questions to Rachel during this conversation and learned about the differences and nuances between PTSD and CPTSD.

We look into the complexities of emotional flashbacks and the varied manifestations of symptoms that can profoundly impact daily life.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.

If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

ADHD and Autism with Althea Rice - Australia and New Zealand

Fri, 07 Jun 2024 16:00:00 +0000

This month, our Sunflower Conversations Podcaster, Peta Hooke, interviews Althea, talking about ADHD and Autism.

The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them.

It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

Inflammatory Bowel Disease (IBD) with Amy Kelly, Crohn's & Colitis Ireland

Mon, 20 May 2024 08:00:00 +0000

Our guest is Amy Kelly, Head of Communications and Fundraising at Crohn's & Colitis Ireland. Amy was diagnosed with Crohn's Disease when she was 27 and shares her lived experiences and the impacts and adjustments she has made to her life.

Amy explained that inflammatory bowel disease is an autoimmune disease and how it differs from irritable bowel syndrome (IBS). Amy walks us through what the symptoms are and shares some interesting statistics about the impacts of IBD on patients.

The 'poo taboo' campaign seeks to encourage and educate what healthy bowel movements are and what they should look and feel like to help spot and seek diagnosis at an earlier stage.

Amy also hosts the "GutCast" podcast – the first podcast for people living with inflammatory bowel disease (IBD) in Ireland.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Hosted by Chantal Boyle and Scott Casson-Rennie, Hidden Disabilities Sunflower.

If you enjoyed this podcast please leave a rating and review. Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

PMDD with Anna Cooper and Dr Rebecca Tomlinson, Menstrual Health Project

Wed, 01 May 2024 16:00:00 +0000

This podcast was recorded as an Instagram Live.

CONTENT WARNING. The terms suicide and eating disorders are referenced. Please visit your healthcare provider if you are concerned about any issues relating to this topic.

Anna Cooper, co-founder of the Menstrual Health Project, and Dr Rebeccah Tomlinson joined us to answer questions from the Sunflower community about Premenstrual Dysphoric Disorder (PMDD).

In addition to explaining the differences between PMDD and PMS/PMT, they advised on how to seek support and discussed how important it is to track one's cycle.

Questions from the community:

1. What are the common symptoms of PMDD?

2. What’s the tipping point where PMS becomes PMDD?

3. How do people cope with PMDD / what accommodations do people give themselves?

4. Is there a possibility that the symptoms get less severe or even completely stop by itself?

Disclaimer: Any reference that talks about women includes people assigned female at birth.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

The Menstrual Health Project

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

If you enjoyed this podcast please leave a rating and review. Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Follow us on socials:

PMDD and Chemical Menopause with Amani Omejer

Sun, 21 Apr 2024 01:00:00 +0000

CONTENT WARNING. We touch upon suicide, eating disorders and self-harm. Our guest will talk about her lived experiences, and signposting to charities for support. Please visit your healthcare provider if you are concerned about any issues relating to this topic.

This podcast was recorded as an Instagram Live.

For years, Amani battled with anxiety, rage, suicidal thoughts and attempts, which she attributed to severe CPTSD and the other symptoms she experienced were attributed to endometriosis and adenomyosis.

The turning point arrived after being put into chemical menopause while waiting for a hysterectomy. The suicidal thoughts disappeared, Amani instantly felt better, and that is when she discovered that she had been living with PMDD.

Amani talks about the treatments she had, implantable estrogen and the importance of community.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Amani's Instagram The Empty Uterus Club
International Association for Premenstrual Disorders IAPMD
The Menstrual Health Project

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Follow us on socials:

Parkinsons with Eve Jensch

Sun, 14 Apr 2024 01:00:00 +0000

Eve Jensch is 37 and was diagnosed with Parkinson's two years ago. Eve lives in Ireland with her three children and her husband and joins us to talk about her lived experience with Parkinson's. Parkinson's is a progressive neurological condition, which means that it causes problems in the brain as the cells stop working correctly and, over time, stop producing dopamine.

Eve is passionate about dispelling the myth that Parkinson's is an old man's disease. She uses her social media platform to create a community for everyone affected by it to connect, share, and help one another. Her social posts are often humourous despite the daily challenges she faces managing her illness.

Describing her symptoms and the treatment options available, we learn about how vital dopamine is for the body and the various ways in which it is administered.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Parkinson's UK charity
Parkinson's Ireland charity
Eve's Instagram pd_and_me

Hosted by Chantal Boyle and Scott Casson-Rennie, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Autism and ADHD with Clare and Matilda Kemp

Sun, 31 Mar 2024 01:00:00 +0000

Clare and her daughter, Matilda, join us to discuss Matilda's school experiences. Matilda is nine years old and in year five at primary school; she is autistic and has ADHD.

Friendships can be challenging because Matilda is autistic and doesn't always pick up on social cues. Having ADHD means she needs to be active. Matilda tells us about the adjustments her school has made to support her, including a visual timetable and movement breaks. Mum Clare shares her journey so far, first identifying the areas of daily life Matilda struggles with, then obtaining a diagnosis, and now pursuing a satisfactory EHC plan, which is crucial to ensure that they apply to the best secondary schools to meet Matilda's needs and that when she is there, she has access to adequate funding to support her.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

National Autistic Society

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Optic Nerve Glioma with Michelle Culbert and Karina Smith

Sun, 17 Mar 2024 01:00:00 +0000

Our guests are Karina Smith and Michelle Culbert, from South Florida, who both have Optic Nerve Glioma, a rare eye condition affecting sight that typically affects young children. It is a slow-growing brain tumour in or around the optic nerve, which connects the eye to the brain. As the tumour progresses, it presses on the optic nerve.

Karina and Michelle believe they are the only two adults in Florida with this rare eye condition. Sadly, there is very little knowledge, advice, and guidance on how to treat optic nerve glioma in adults.

They both explain how what the sudden onset of sight loss was like for each of them, physically and emotionally and the steps that they had to take to weather the mental health impact it took. We also hear about the treatment they have both had, which includes proton beam radiation therapy.

Together, they are reaching out globally to other people with rare eye conditions to create a support community where people can share their experiences.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

ONG.Awareness Instagram
Contact: ong.aware@gmail.com

Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Eating Disorders, Autism and ADHD with Adam Fare

Sun, 03 Mar 2024 01:00:00 +0000

CONTENT WARNING. The topic is eating disorders, and throughout the podcast, our guest will talk about their lived experiences, as well as signposting to charities for support. Please visit your healthcare provider if you are concerned about any issues relating to this topic.

Undiagnosed autism and ADHD have played a part in Adam developing an eating disorder at secondary school. He battled through excruciating pain until the point of becoming hospitalised and, as a result, being left irreparably physically damaged.

During the conversation, Adam shares his journey of recovery. He talks us through the different types of eating disorders and how they present. We also cover the dangers of diet culture, societal pressures, stigma and shame.

Adam has a stoma as a result of severe intestinal issues and a prolapsed bowel, as well as musculoskeletal syndrome, all of which leave him with chronic pain and fatigue.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Learning Disabilities with Dorothy Watson and Marcus Tanner, The Sunnybank Trust

Sun, 25 Feb 2024 01:00:00 +0000

Our guests are Marcus Tanner and Dorothy Watson, CEO of The Sunnybank Trust.

“The Sunnybank Trust supports adults with a learning disability across North East Surrey to have confidence, opportunities and control over their own lives and to be able to live without prejudice and discrimination.”

In our conversation, we tackle the myths and stigma attached to learning disabilities (LD) and what action must be taken to dispel them. The statistics see less than favourable outcomes for people with an LD with mental health and employability. For the most part, this is due to barriers to access.

There is an overwhelming call to collaborate and work with people with LD to share lived experiences and provide advice to improve disability inclusion. These actions will significantly improve life opportunities and access for the LD community.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Eating Disorders with Zoe Summers, BEAT UK

Sun, 11 Feb 2024 01:00:00 +0000

CONTENT WARNING. The topic is eating disorders, and throughout the podcast, our guest will talk about their lived experiences, as well as signposting to charities for support. Please visit your healthcare provider if you are concerned about any issues relating to this topic.

Our guest, Zoe Summers, joins us to talk about eating disorders (ED), which remain a taboo subject and can be lethal. Through Zoe’s lived experience, she has become an Ambassador for the eating disorder charity BEAT UK.

In the conversation, we cover different types of eating disorders, and more specifically, binge eating disorder and orthorexia. Zoe explains the characteristics of these and how they affected her.

We chat about some of the reasons why eating disorders develop and what help and support exist to recover. As well as suggestions for approaching the subject and essential do's and don'ts about what to say to someone with an ED.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

BEAT UK

Stroke with Jo Aurora, Different Strokes, and Hayette Wilkinson

Sun, 28 Jan 2024 01:00:00 +0000

Jo joined us from the charity Different Strokes to answer Sunflower wearers' questions and to explain what a stroke is, the signs to look out for, and what action to take, as well as advice about the support available to patients.

Hayette had a stroke at age 32 and has been on a long journey of rehabilitation and recovery; she talks us through the surgeries she had and the everyday things that she has had to relearn through a multitude of therapies.

F.A.S.T

F is face.

A is arm.

S is speech.

T is time.

Different Strokes add two additional letters to the acronym B.E.F.A.S.T = B. Balance and E. Eyes - find out why by listening to the full conversation, which is packed full of helpful advice.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

Different Strokes
Helpline 0345 130 7172

Stroke and Hayette Wilkinson

Sun, 17 Dec 2023 01:00:00 +0000

This podcast was recorded as an Instagram Live.

Hayette is a mother, wife and stroke survivor. Aged 32 Hayette experienced a severe stroke called a subarachnoid haemorrhage, followed by an ischaemic stroke a few days later. A subarachnoid haemorrhage (SAH) is a life-threatening type of stroke, caused by bleeding into the space surrounding the brain.

Our conversation covers the journey Hayette has been on and the impacts the strokes had on her cognitive and physical abilities. Her work, her relationships and her ability to resume work.

Hayette, is a survivor in every sense of the word and this makes for a fantastic conversation.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support:

Autism and the Sunflower with William Vanderpuye

Sun, 10 Dec 2023 01:00:00 +0000

William Vanderpuye is a social worker and is autistic. In this conversation, William shares what the Sunflower means to him and the confidence and support it has given him while in education at university and now in employment.

William's employer, Sutton Council, is supportive and offers understanding and kindness so that he can succeed and excel in supporting families with learning disabilities.

This testimonial gets to the heart of what the Sunflower seeks to do, the people it aims to serve, and the community it seeks to improve.

Please share this podcast to help increase knowledge and understanding of the Hidden Disabilities Sunflower.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Follow us on socials:

Perimenopause and Menopause with Dr Louise Newson

Sun, 03 Dec 2023 01:00:00 +0000

Dr Louise Newson is a GP & Menopause Specialist and joined us to share her knowledge and expertise. Dr Newson and her team at Newson Health are at the forefront of advocating for women to get the appropriate treatment to support their hormone health. As well as investing in research and training to help healthcare practitioners make the best decisions for their patients.

We cover a wide range of questions, from perimenopause and menopause to how oestrogen, progesterone and testosterone impact the body and the importance of good hormone health to help prevent serious inflammatory disabilities later in life, such as cardiovascular disease and osteoporosis. Dr Newson also answers questions from Sunflower wearers.

If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.

For support:

Download the Balance app
Newson Health

Autism with Maddie White

Sun, 29 Oct 2023 01:00:00 +0000

This podcast was recorded as an Instagram Live.

Maddie shared her lived experience of being wrongly diagnosed with mixed anxiety, depression and panic disorder before eventually being diagnosed with autism when at university aged 21. In our chat, we talked about her life as she tried to navigate the neurotypical world and her newfound approach to life since being diagnosed with ASD.

Maddie explains how her sessions with a counsellor who was explicitly trained in ADHD and Autism brought the realisation that all along, her difficulties resulted from being overwhelmed, over-stimulated, and the need to know exactly what lay ahead, as opposed to depression and anxiety.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support:

National Autistic Society

Perimenopause and Menopause with Fay Durrant

Sun, 15 Oct 2023 01:00:00 +0000

Fay Durrant is a Wellbeing and Menopause coach and joined us to discuss perimenopause and menopause as well as her own lived experience with perimenopause.

The conversation allows our hosts, Chantal and Paul, to speak about their experiences with having and living through perimenopause. Also discussed is the impact of this phase of life on relationships and work, as well as some of the hundreds of physical and mental symptoms.

We finish with some self-care tips to support mental health, including mindfulness activities and breathwork.

If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.

For support:

Wellness & Wilderness Get the "How to feel like less of a crazy B*t$h!" Perimenopause mini ebook download.
Fay Victoria (Wellness Wonder Woman) Durrant | LinkedIn
In Her Right Mind | No-nonsense Menopause Advice written by Andrea Newton to help men navigate menopause with the women in their life.

Rett Syndrome with Beth Johnsson

Sun, 08 Oct 2023 01:00:00 +0000

Beth Johnsson joins us to talk about Rett Syndrome. This rare genetic disorder affects brain development, resulting in severe mental and physical disability.

It's estimated to affect around 1 in 10,000 girls born yearly and is rarely seen in boys.

Beth talks about her personal experience with her daughter, Hannah, who was diagnosed with the condition when she was very young. Hannah now has a complex list of disabilities, including epilepsy, scoliosis, apnoea, respiratory problems, and digestive problems. She's waiting for a gastrostomy. She might need spinal surgery. There are over 50 symptoms of Rett Syndrome, some of which are life-threatening.

Despite Hannah's developmental regression, she brings joy to their busy household with her side-eye glances at her parents and giggling at her younger brothers' antics.

For support:

Mental Health with Sandy Kaur, Sehhat

Sun, 24 Sep 2023 01:00:00 +0000

Sandy Kaur joins the Sunflower Conversations to discuss mental health and suicide prevention in Punjabi and South Asian communities and how her charity Sehhat is tackling the topic.

We discuss the barriers to seeking support, including the obvious one, which is language and the cultural fear of judgment from the community.

Whether talking about mental health or processing grief after suicide, Sandy explains how essential it is to provide access—starting by building trust and creating safe spaces to start those conversations.

If you liked this podcast, please leave a review, subscribe and share.

If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.

For support

Multiple Sclerosis with Lisa Nice

Sun, 10 Sep 2023 01:00:00 +0000

Lisa Nice has multiple sclerosis (MS). She joins Chantal and Paul to explain how the autoimmune and neurodegenerative condition affects her. We also discuss her employer, Comic Relief's approach to diversity, equity and inclusion.

Diagnosed late in life, it came as a shock, and it took a while for Lisa to accept her diagnosis, which is relapsing-remitting. There are many symptoms of MS, and Lisa shares the ones she has, how she manages them, her treatment, and the adjustments she has had to make at work and in her social life.

Footdrop – the individual has difficulty lifting the front part of the foot (i.e. the front of your foot may drag on the ground as you walk)

Allodynia – pain due to a stimulus that does not normally provoke pain (i.e. a light touch causing pain when it wouldn't normally)

If you liked this podcast please leave a review, subscribe and share.

If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.

For support

Hypertrophic Cardiomyopathy (HCM) with Bethany and Hannah Keime

Sun, 03 Sep 2023 01:00:00 +0000

Our guests are sisters Bethany and Hannah Keime, who have a condition called Hypertrophic cardiomyopathy (HCM), a disease of the heart muscle where the muscle wall of the heart becomes thickened.

Bethany and Hannah received a diagnosis in high school and have had to make significant changes to their lives and sporting passions. They have both been fitted with an implantable defibrillator, which saved Hannah's life when she fell into cardiac arrest while asleep in bed.

Together Bethany and Hannah have created a support charity called HEARTCHARGED to build a community for other young people with the same condition and needing a shoulder to lean on. They are committed to educating and raising the profile of this chronic illness and the importance of AEDs (defibrillators).

If you liked this podcast please leave a review, subscribe and share.

If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.

For support

ADHD, Processing Disorder and Depression with Ginger Ragaishis

Sun, 27 Aug 2023 01:00:00 +0000

Ginger Ragaishis is Miss Vermont Teen 2023 and is currently a junior in high school. Ginger has ADHD and learning disabilities and uses her lived experience to deliver talks to younger students to give them the confidence to be their authentic selves while at the same time raising awareness about acceptance.

We talk about how Ginger's processing disorder and ADHD have affected her educational experience and how essential the adjustments made by her school have been to allow her to excel academically.

Ginger has experienced depression and discusses her triggers and how she advises young people to seek advice.

If you liked this podcast please leave a review, subscribe and share.

If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.

Cerebral Palsy with Eva Abley

Sun, 13 Aug 2023 15:00:00 +0000

Eva Abley joined Paul and Chantal at Disability Expo to share her life experience of living with cerebral palsy.

Eva is 15 years old and a 2022 Britain’s Got Talent finalist who endeared the country when she took to the stage to entertain, amuse and delight with her quick-witted and observant humour and comedy routines.

Close to Eva's heart is her work as a disability activist, and in this conversation, we talk about her lived experience of cerebral palsy, mental health, social exclusion and her activisit work.

This is a live recording.

If you liked this podcast, please leave a review, subscribe and share.

If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.

Watch Eva's BBC programme - My Life Eva's Having a Ball

Hosted by Chantal Boyle and Paul White, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Fragile X Syndrome with Monique Mitchell and Liz Jewell, Fragile X Australia

Sun, 06 Aug 2023 01:00:00 +0000

Liz Jewell is the Family Support Counsellor at Fragile X Australia, and Monique Mitchell is the mum of two children with Fragile X Syndrome.

This conversation teaches us about Fragile X characteristics and the difference between boys and girls.

We also include a Q&A from the Sunflower community, which is very insightful.

If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.

For support and information

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Borderline Personality Disorder (BPD) and ADHD with Solène Anglaret

Sun, 30 Jul 2023 01:00:00 +0000

Solène joined Ruth and Chantal at Disability Expo to share her life experiences of living with BPD and ADHD.

It was a deep and meaningful conversation where Solène revealed the highs and lows, including how her therapy has given her the tools to accept and embrace her mental health and ADHD.

This is a live recording.

If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.

For support and information

Hosted by Chantal Boyle and Ruth Rabét, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Autism with Patrick Fopma

Sun, 16 Jul 2023 01:00:00 +0000

For our first-ever face-to-face Sunflower Conversations recording, Chantal was joined by Patrick Fopma, who is autistic and who describes himself as having Aspergers. In our conversation, we discussed his differences, including how he wanted to fit in when he was at school. We cover his journey through education and the barriers he faced to gaining employment. Patrick offers some great advice to young autistic people but also to employers.

This was a live recording, and as such, the sound isn't the best quality.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support

National Autistic Society

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Bowel and Vaginal Cancer and Acoustic Neuroma with Karen Bucknall

Sun, 02 Jul 2023 09:00:00 +0000

Karen is a beauty pageant queen who joins the conversation to discuss her diagnosis, treatment and recovery.

Karen shares intimate details of her health journey in a humorous and endearing way. After coming to terms with her post-surgery body, Karen enters beauty pageants to build her self-confidence and help support other women and raise cancer awareness.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support

Dysautonomia with Miss Chile Ambar Zenteno

Sun, 25 Jun 2023 01:00:00 +0000

Ambar Zenteno, Miss Chile, has dysautonomia and is shining her light on the condition through the beauty pageant Miss World - Beauty with a Purpose platform. Dysautonomia is a term used to describe any disorder of the autonomic (automatic) nervous system.

Ambar advocates for the Hidden Disabilities Sunflower in Chile and plans to raise the profile of invisible disabilities and dysautonomia as she heads to compete in Miss World this year.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support:

ADHD, Developmental Coordination Disorder, and Sensory processing with Justin Wesolek

Sun, 18 Jun 2023 01:00:00 +0000

Justin has ADHD, Developmental Coordination Disorder, and Sensory processing issues. A graduate at the University of Wisconsin-Whitewater, in Wisconsin, which has a special focus for students with disabilities.

Justin explains how each of his disabilities affects him and what accommodations his college has made so that the barriers to his education and work are removed.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Special Olympics World Games Berlin 2023 with Anna Ballreich

Sun, 11 Jun 2023 01:00:00 +0000

Anna Ballreich joins us from the Special Olympics World Games Berlin 2023 to explain the history of the games and what visitors can expect to see and experience.

The Special Olympics is from the 17th – 25th June 2023. 7,000 Special Olympics athletes with intellectual disabilities from 190 delegations will compete in 26 sports. The athletes will be supported by more than 3,000 coaches and 20,000 volunteers.

For support:

Epilepsy with Murray Goulder and Daniel Jennings, Epilepsy Action

Sun, 28 May 2023 01:00:00 +0000

Murray Goulder has epilepsy and joins us with Daniel Jennings from charity, Epilepsy Action, to talk about absence seizures, treatment, public misconceptions and access to venues.

Murray campaigns for greater awareness of epilepsy using his lived experiences. An avid music lover, he regularly attends concerts and is passionate about ensuring access for all.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support:

Epilepsy Action and the Seizure First Aid video
Call Epilepsy Action 0808 800 5050

Disability Expo with Jade Godier

Wed, 24 May 2023 01:00:00 +0000

Jade Godier joins us to share exciting news about Disability Expo, a free person-focused event for people with lived experience of disability. Showcasing the latest developments on the disability market, relevant services and information, and a full programme of inclusive activities, performances and presentations from engaging relatable people.

More information

Disability Expo information and free tickets

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

AbleVu and Meegan Winters

Sun, 21 May 2023 01:00:00 +0000

Meegan Winters is the Hidden Disabilities Sunflower program regional partner in the US and co-founder of AbleVu and Able Eyes.

Meegan talks about her life experiences and why she decided to create the AbleVu, - which provides a detailed preview of an organisation's accessibility features. Access virtual walk-through tours, accessibility checklists, and other details to ensure the location is accessible prior to visiting.

More information

AbleVu

Congenital Anosmia and visual impairment with Claire-Louise Pitman

Sun, 07 May 2023 01:00:00 +0000

Claire-Louise has Congenital Anosmia and is severely visually impaired. Since birth, Claire-Louise hasn't had a sense of smell, but only discovered this when she was 11 years old.

We talk about how Claire-Louise navigates through life without two of her senses and what effect that has on her anxiety.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support:

Fifth Sense

Postural Tachycardia Syndrome (PoTS) with Jasmeet Kaur and Helen Eftekhari, PoTS UK

Sun, 09 Apr 2023 01:00:00 +0000

Helen Eftekhari is a specialist nurse in Postural Tachycardia Syndrome (PoTS), and Jasmeet Kaur has lived experience of the health condition.

Our conversation discovers what PoTS is and how it affects the body, including the impact it has physically and mentally on patients who can be left with chronic pain, fatigue and anxiety.

Helen and Jasmeet share their joint knowledge to inform ways to care for and manage flare-ups, and advice on how others can support patients. They also respond to questions about PoTS from the Sunflower community.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support:

PoTS UK

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

ME/CFS and Long Covid with Russell Fleming, ME Association

Sun, 05 Mar 2023 01:00:00 +0000

Russell joins us from the ME Association to discuss Myalgic Encephalopathy and Chronic Fatigue Syndrome (ME/CFS), including what it is, and how it affects people.

ME/CFS is a chronic, complex, multisystem disease that can produce a wide-range of disabling symptoms, dramatically impacting a person's ability to initiate or complete everyday tasks and to mobilise normally.

We also talk about the similarities between ME and Long Covid.

Russell shares his health journey with ME and his progress over the past 23 years. The conversation is full of insightful information for support and clinical pathways.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support:

ME Association

Information and resources:

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Lupus with Paul Howard, Lupus UK and Rachel Hall

Sun, 29 Jan 2023 01:00:00 +0000

We discuss the autoimmune disease Lupus, with Paul Howard, the CEO of Lupus UK. And Rachel Hall, who has lived experience of Lupus.

Paul talks us through what the disease is and the symptoms to look out for and Rachel shares how Lupus has affected her, and the health journey she has been on. The conversation is packed with ways to support your career and where to turn to for support.

Rachel has created an online group to offer support to other people with Lupus.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support and resources

Lupus UK Employment Guidance

Lupus_gurl:

Rachel’s blog

Rachel’s Twitter

Rachel’s Instagram

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Functional Neurological Disorder (FND) with Dr Chris Symeon and Dawn Golder, FND Hope UK

Sun, 08 Jan 2023 01:00:00 +0000

“Functional neurological disorder is a really common neurological condition. It happens because of a problem with brain signalling. So, it's involving brain networks rather than specific anatomical damage and it can affect any part of the nervous system.”

Dr Chris Symeon, is a consultant neuropsychiatrist at St George’s University Hospital NHS Foundation Trust and the clinical lead for the FND rehabilitation programme. Dawn Golder, is a National Advocate of FND Hope UK and has lived experience with FND.

In this conversation we get answers to the questions raised by Sunflower wearers about FND. Advice about diagnosis and access to treatment pathways.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support and resources

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Hidden Disabilities Sunflower

Type 1 Diabetes with Emma Cathro

Sun, 11 Dec 2022 02:00:00 +0000

“But you can end up in a coma if your sugar levels are too high because your body just can't function with so much sugar.”

We are joined by Sunflower Friend - Emma Cathro. Emma has recently graduated with a First Class Honours in German and Sociology at the University of Aberdeen and is now a research associate. Emma has type 1 diabetes and shares her story of living life with the condition.

We cover the main symptoms and what to look out for prior to getting a diagnosis. Emma explains her daily routine of how she ensures that she maintains safe levels of insulin and the technology she uses to do that.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support

Juvenile Diabetes Research Foundation, JDRF

Diabetes UK

Resources/technology

FreeStyle Libre glucose sensor

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Hidden Disabilities Sunflower

COPD with Dr Andrew Whittamore Asthma & Lung UK and Felicity Payne

Sun, 20 Nov 2022 01:00:00 +0000

Dr Andrew Whittamore of Asthma and Lung UK and Felicity Payne join us to talk about Chronic obstructive pulmonary disease, COPD which is the name for a group of lung conditions that cause breathing difficulties.

Felicity has emphysema which comes under the umbrella of COPD, and explains how she has grown used to the condition, after initially finding herself feeling isolated with many unanswered questions. Felicity shares the activities she does to keep her lungs as strong and healthy as she can.

Dr Andrew Whittamore provides us with a wealth of knowledge about the condition and the different pathways to support.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support

Asthma and Lung UK COPD Support

Breathe Easy Support Groups

Asthma and Lung UK Helpline 0300 222 5800. Lines open 9am-5pm, Monday to Friday.

Asthma and Lung Email helpline@asthmaandlung.org.uk

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Dyslexia and Dyspraxia with Dayna Halliwell

Sun, 13 Nov 2022 01:00:00 +0000

Dyslexia and Dyspraxia with Dayna Halliwell

Dayna is a digital content creator and actor and uses her lived experience of dyslexia and dyspraxia to raise awareness on her platforms of her learning difficulties. We talk through Dayna’s education experiences in primary school and university and the support that exists, but, also the needless and endless barriers to support from the Disabled Student Allowance, DSA.

There are some great tips from Dayna on how to ‘take up space’ and not be apologetic for who you are. We talk about assistive technology including Natural Reader and Grammarly.

We touch on language and the Equalities Act too as well as Reading Train Station for being accessible and Sunflower-friendly!

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support

British Dyslexia Association

Resource

Grammarly

Dyslexicdayna My Mind is a Series of Unfinished Doodles Planner

Natural Reader

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Hidden Disabilities Sunflower

STAMMA with Kirsten Howells

Sun, 30 Oct 2022 01:00:00 +0000

“…there are some people who are super comfortable stammering who won't looking for therapy or to change anything about their relationship with their stammering and the way that they talk. For those people who are looking to change that there's a range of support and therapy options, and speech and language therapy is one of those options.”

Kirsten joins us on The Sunflower Conversations podcast to share with us her knowledge. Kirsten is the Programme Lead for Adults at STAMMA and is also a speech and language therapist with lived experience of stammering.

The disruption to speech isn’t a sign of intelligence, the person knows exactly what they want to say. We discuss some of the misconceptions and stigma associated with the neurological condition and ways in which society can support people who stutter by allowing space for communication.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support

STAMMA

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Hidden Disabilities Sunflower

National Stuttering Association with Pam Mertz

Sat, 22 Oct 2022 01:00:00 +0000

Pam joins us to give an insight to stuttering and the theme for International Stuttering Awareness Day which is Be Seen, Be Heard. The stereotypes associated with stuttering can often mean that a person that stutters is excluded, these barriers can affect self-worth.

Be Seen, Be Heard seeks to challenge those stereotypes and encourage patience and acceptance to allow everyone to be their whole self. Pam explains that the neurodiverse condition isn’t a sign of intelligence but a disruption to how a person communicates, they know what they want to say but can experience a block or repetition.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support

National Stuttering Association, We Stutter

Hosted by Chantal Boyle and Paul White, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Hidden Disabilities Sunflower

Migraine with Steph Weatherley, The Migraine Trust and Katy Brown

Sun, 16 Oct 2022 01:00:00 +0000

Steph Weatherley is the Information and Support advisor at The Migraine Trust, and has lived experience of migraines. We are also joined by Katy Brown. Katy is the CEO of her own company Magic Mountain and lives with chronic migraines.

In this conversation we clear up the common myth about migraines not being simply headaches, it is a neurological condition. Katy shares with us how her daily migraines impact her life and the how she has set healthy boundaries to ensure that she is able to live her life to her full potential. Both Steph and Katy discuss the many treatments available both medical and holistic and the support that Migraine Trust provides to people living with the condition.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support

The Migraine Trust

Migraine in the workplace Toolkit

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Hidden Disabilities Sunflower

British Dyslexia Association with Helen Goodsall

Sun, 02 Oct 2022 11:00:00 +0000

British Dyslexia Association with Helen Goodsall

Helen is the Knowledge & Information Manager at the British Dyslexia Association, an experienced workplace assessor and a parent of dyslexic children. She joins us to discuss the theme for Dyslexia Awareness week ‘Breaking through barriers’ which looks at how those living with dyslexia can overcome obstacles in their lives, this could be during education, work or general day-to-day living.

1 in 10 of the population has dyslexia, a processing disorder, but with the right support and reasonable adjustments barriers to education and employment can be removed. The campaign seeks to reframe the language and stigma attached to the condition, which simply put is a different way of learning.

In the conversation Helen shares with us ways society can ensure that no one is left behind due to their learning differences.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support

British Dyslexia Association

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Hidden Disabilities Sunflower

FASD with Jacob Casson-Rennie

Sun, 11 Sep 2022 01:00:00 +0000

FASD with Jacob Casson-Rennie

Jacob is 16 years old and lives with his parents in Ireland, who head up FASD Ireland and Hidden Disabilities Sunflower Ireland.

Jacob talks to us about living with Foetal Alcohol Spectrum Disorder, FASD. For Jacob auditory processing and memory is an issue and he explains how important it is that his peers and school are educated on the condition so that his additional needs can be understood and met. At school he has learning support staff who are crucial to his educational needs. And at his rugby club his coach has adapted his methods so that Jacob is better able to cope with the fast-paced game and make a real contribution to team.

As well as supporting his parents with their vital work in raising awareness of FASD and invisible disabilities, Jacob also expresses how he uses his determination as a positive force and talks about his aspirations.

When planning to have a baby, both parents should stop drinking to avoid any chance of the baby having FASD.

If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.

For support

FASD Ireland
National FASD UK
FASD Hub Scotland
Dr Raja Mukherjee

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit Hidden Disabilities Sunflower UK or Hidden Disabilities Sunflower Ireland

Autism and ADHD with Jen Hankin

Sun, 28 Aug 2022 01:00:00 +0000

Jen Hankin is a musician who composes, teaches and performs. Her creative skills extend to fine arts (digital and watercolour), photography, videography, fashion design and writing. Jen is also autistic and has ADHD.

Jen has created a new piece of music called 'The End of Torpor', about coming out of a period of burnout related to her neurodiversity.

This conversation focuses on Jen's education and how she uses her experiences to teach music to young neurodiverse students.

To follow Emerald Ruby and find out more, use the links below:

The Emerald Ruby

Tiktok

Emerald Ruby Bandcamp

Emerald Ruby Spotify

Youtube

Facebook

Emerald Ruby Instagram

The End of Torpor for Flute and Cello Live Video

Hosted by Chantal Boyle and Sandee Facy Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Hidden Disabilities Sunflower UK or Hidden Disabilities Sunflower Australia

Cystic Fibrosis and Ableism with Izzie Jani-Friend

Sun, 24 Jul 2022 01:00:00 +0000

Izzie is a journalist and is using her lived experience as a young woman with cystic fibrosis to combat ableism through her writing.

In this conversation we discuss how her chronic health condition, cystic fibrosis affects her daily life and how she manages her healthcare routine with work.

Then we move on to what ableism is, the subtleties of it as well as the directness and where it can occur, such as on public transport and in the workplace. Izzie shares with us her ideas around how to eradicate it from society.

For support

If you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner.

Cystic Fibrosis Trust

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit Hidden Disabilities Sunflower

Obsessive Compulsive Disorder and mental health with Chloe Francis

Mon, 04 Jul 2022 17:00:00 +0000

Chloe Francis has a range of health conditions including Obsessive Compulsive Disorder and Tourettes syndrome/Tic disorder, Sensory processing disorder, Vestibular processing disorder and Hypermobility, Anxiety disorder and Sleep disorder.

In this conversation we discuss what OCD really is and what it feels like to have compulsions, we also discuss panic attacks and the affect that they have on a person. Chloe talks us through her early education and the support that she received from her classmates, through to her current job at the BBC.

Chloe has some great advice on how to support a friend, family, or colleague who is experiencing challenges with their mental health.

For support

If you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit Hidden Disabilities Sunflower

Bowel and lung cancer, stoma and dialysis with Gemma Savory

Sun, 03 Jul 2022 01:00:00 +0000

Gemma had a missed early diagnosis of bowel cancer because the doctor believed her to be too young to have cancer at the age of 30.

In the past 8 years she has undergone many operations and treatments and is now stage 4 NED. Gemma is very open about the procedures she has had and wants to use her platform to raise awareness of bowel cancer in young people and also provide a support network to people who are living with cancer.

In this conversation we cover how important it is to fight for yourself when you believe that something isn't right with your body. Also discussed are the affects of surgery and chemotherapy, and the symptoms of bowel cancer to look out for - it is very important to seek a diagnosis as early as you can.

This was recorded 2 weeks prior to Deborah James, BowelBabe, sadly passing away.

For support

If you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit Hidden Disabilities Sunflower

Tourette Syndrome and Brazilian Jui Jitsu with Khovan Hussein

Sun, 12 Jun 2022 01:00:00 +0000

Tourette Syndrome and Brazilian Jui Jitsu with Khovan Hussein

“With my Tourette's, sometimes my verbal tics can be stuff like swearing, or I might say something that's offensive, but obviously I can't help it. So when I wear the badge outside, it makes me comfortable knowing that... It just shows everyone that I can't help it.”

Khovan and his mum Shireen join us to celebrate Khovan’s achievement in being awarded with The Rotary Young Citizen Sporting Hero Award. Khovan is autistic, has Tourette Syndrome as well as ADHD.

As a child he struggled with communication and social interaction, but since joining a Brazilian Jui Jitsu club it has been the key to his communication skills and participation, providing him with a sense of community, development and growth.

Khovan explains how the martial art answers his sensory needs and how he is committed to raising money for charities, and supporting other young people and their parents through his Tik Tok account @KhovanH where he posts videos and answers questions.

For support

If you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner.

Tourettes Action

Khovan’s Instagram @Khovanhn

Khovan and his sisters Just Giving page for Tourette’s Action - Move for Tourette’s (ends 15th June)

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit Hidden Disabilities Sunflower

Registered blind with Claire Sisk

Sun, 05 Jun 2022 01:00:00 +0000

Registered blind with Claire Sisk

Claire had two strokes aged 29 after which she developed retinal dystrophy and is now registered blind. Following her strokes Claire has had to learn how to navigate in a sighted world and uses her Instagram account CanSeeCantSee to raise awareness of what daily life is like with sight loss and offer support and advice. Her work has recently been acknowledged with Best Social Media Impact of the Year award from RNIB as well as appearing on TV show Steph’s Packed Lunch .

Claire explains what it was like to slowly lose her sight and what adjustments she has made at home to continue to run the house and do all the chores she previously did. We also discuss accessible make up as well as the perceived barriers to employment.

For support

If you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner.

RNIB
Claire's Instagram account CanSeeCantSee

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit Hidden Disabilities Sunflower

Tourette Syndrome and Autism with Martin Moxness

Sun, 22 May 2022 08:00:00 +0000

Tourette Syndrome and Autism with Martin Moxness
Martin Moxness lives in Denmark and has many talents including being a successful Instagram a_different_spectrum and Tik Tok a_different_spectrum influencer, along with being creatively gifted in music and photography. Martin is autistic and uses his platform to raise awareness of his health conditions which include Tourette syndrome and ADHD.

Martin explains that he has mental tics, intrusive throughs, OCD, as well as a range of verbal tics and how they form in his mind.

During the conversation we discuss how the publics perceptions and prejudices have a damaging consequence, leading to supressing tics which causes exhaustion both physically and mentally.

What we take from this podcast is the importance to normalise Tourette Syndrome, including tics and stimming, to foster acceptance and understanding.

For support

If you are experiencing issues discussed in this podcast contact your GP or healthcare practitioner.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit Hidden Disabilities Sunflower

Cochlear implant with Steven Mifsud MBE

Sun, 08 May 2022 01:00:00 +0000

Steven Mifsud, MBE, is profoundly deaf and joined us on the Sunflower Conversations to talk about his cochlear implant. This small, complex electronic device helps provide a sense of sound that enables him to hear.

Steven explains the difference between a world of silence and non-stop sound. Since his first hearing aid aged two, technological advances have come a long way, and the sounds he can now hear are vastly improved.

We talk about the social and medical models of disability, how they differ, and how they impact the deaf community. Steven’s decision to have a cochlear implant affected some of his friendships because, for many deaf people, the medical model of disability is wrong.

For support

If you are experiencing issues discussed in this podcast, contact your GP or healthcare practitioner.

British Deaf Association (BDA)

Royal National Institute for Deaf People (RNID)

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Travel series – In the air with Shannon Wandmaker

Sun, 24 Apr 2022 01:00:00 +0000

“And I saw that British Airways most recently became involved in the Sunflower program. And that to me makes a lot of sense”

Shannon is an aviation specialist and joins us from Brisbane Australia to share his expertise and insights along with helpful tips for people with disabilities who wish to travel.

Sitting on the Queensland Accessible Transport Advisory Council Shannon has a wealth of knowledge and we discuss problem solving, design and how in his opinion the Sunflower is the essential travel companion.

Hosted by Chantal Boyle and Sandee Facy, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit Hidden Disabilities Sunflower

Foetal Alcohol Spectrum Disorder, FASD with Tristan Casson-Rennie and Jan Griffin

Sun, 17 Apr 2022 08:00:00 +0000

Foetal Alcohol Spectrum Disorder, FASD with Tristan Casson-Rennie and Jan Griffin

Tristan is the founder of FASD Ireland, a not-for-profit charity that aims to raise awareness and provide support to families in Ireland living with FASD. And Jan is birth mum to Rossi who was born with FASD.

They are both passionate about raising awareness of the dangers of drinking alcohol during pregnancy and removing the stigma associated with FASD in order that the families can seek the correct support. Jan didn’t realise that she was pregnant for 4 months, during which she consumed alcohol. It is important to point out that Jan doesn’t have an alcohol addiction and that once aware of the pregnancy she stopped, however there was never any guidance from her doctor to tell her do so.

Tristan also has lived experience with his adopted son who has FASD and is campaigning in Ireland for the condition to be recognised as a disability to support the hundreds of babies born every year to parents who unwittingly don’t realise the harm that alcohol can have on a foetuses brain’s neurological pathways.

This conversation is full of tips for parents, families and carers to use.

When planning to have a baby, you and your partner should stop drinking to avoid any chance of the baby having FASD.

For support

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit Hidden Disabilities Sunflower

Autism diagnosis with Bec Street

Sun, 10 Apr 2022 08:00:00 +0000

Autism diagnosis with Bec Street
Bec works for charity Autism Spectrum Australia, as a Sunflower Advocate and is based in Sydney Australia. Since joining the charity 7 months ago Bec has discovered that she has many traits that sit on the autistic spectrum.

In the conversation Bec explains how she felt as a child growing up and her previous employment experiences where adjustments weren’t made for her neurodiversity.

Now that Bec is working in an inclusive environment it has made the world of difference to her working life. Being able to be her authentic self means that she doesn’t feel as though she must mask and can approach her role fully focused on the job in hand. It also means that she is using less of her energy reserves.

We talk about meeting in the middle and all things neurodiverse!

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

Autism Spectrum Australia

National Autistic Society, UK

Hosted by Chantal Boyle and Sandee Facy, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Hidden Disabilities Sunflower

Long COVID and autism with Linda Dalton

Sun, 03 Apr 2022 08:00:00 +0000

Long COVID and autism with Linda Dalton
Linda contracted COVID in 2020 and has been left battling the effects of Long COVID, the healthcare service and the Government in Ireland ever since.

Once a great lover of the outdoors and fitness she now struggles with daily simple tasks such as answering the front door due to chronic fatigue. The brain fog that she experiences means concentrating on TV programmes, remembering what items she’s looking for when shopping are severely hindered.

Linda is campaigning and raising awareness of Long COVID to be recognized by the Government and healthcare service in Ireland. In this conversation she explains the research that she has discovered.

The conversation also covers both her and her daughter’s recent autism diagnosis and how empowered she feels as a result. Linda now understands her behaviours and how she interacts with the world.

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
Want to share your story? email conversations@hiddendisabilitiesstore.com

Ménière's disease with Lorna Thomas

Sun, 27 Mar 2022 08:00:00 +0000

Meniere’s disease with Lorna Thomas
Lorna Thomas is a musician and has Meniere’s disease which is a long term, progressive condition affecting the balance and hearing parts of the inner ear. Symptoms are acute attacks of vertigo (severe dizziness), fluctuating tinnitus, increasing deafness, and a feeling of pressure in the ear.

During the conversation Lorna explains how her Meniere’s has increased in severity over the past 20 years, including hearing loss and drop attacks. We also discuss what treatment options she has looked at.

She is hopeful that surgery called Endolymphatic Sac Decompression will bring an end to the condition.

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

The Ménière’s Society charity

Facebook support groups

USA

Meniere's Disease Support Group

Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Kidney Disease with Ayesha Edmondson

Sun, 20 Mar 2022 08:00:00 +0000

Kidney Disease with Ayesha Edmondson

Ayesha is a Peer Educator for Kidney Research UK, and she advocates for kidney donors from minority ethnic groups. After experiencing preeclampsia during the pregnancy of her first son Ayesha was diagnosed with Focal Segmental Glomerulosclerosis, FSGS.

She explains what a crucial organ the kidney is for the human body and the functions it performs, as well as symptoms to watch out for. Ayesha is passionate about helping to educate people about kidney disease and is encouraging patients to sign up for the research programme being run by Kidney Research UK.

24 years after her initial diagnosis Ayesha is at Stage 4 of kidney disease and is campaigning for a living donor.

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

Check out Ayesha’s Instagram account

Start the Conversation

Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Endometriosis with Gemma and Aimee

Sun, 13 Mar 2022 10:00:00 +0000

Endometriosis with Gemma Beswick and Aimee Gill

Gemma is a Volunteer Leader for the charity Endometriosis UK. Because of her lived experience of endometriosis she is passionate about supporting people who are waiting for a diagnosis and joins us to answer our questions.

Aimee is a Sunflower wearer, who is now 18 years old but first started experiencing symptoms when she was 11, at 14 she received her diagnosis. Aimee has had numerous surgical and drug treatments.

In the conversation they explain the physical effects of endometriosis and the emotional trauma they experienced at not being believed, having to fight for the correct diagnosis and friends falling away.

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

Endometriosis UK

Check out Aimee’s Instagram account

Endo Fighter

Check out the Fife Group Endometriosis Facebook page

Endometriosis Fife

Invisible Disabilities Index

Endometriosis

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Marc Powell, RNIB talks about NaviLens and Kellogg's

Sun, 06 Mar 2022 08:00:00 +0000

Marc Powell, RNIB talks about NaviLens and Kellogg's
If you have a visual impairment how do you know what you are buying, whether it is suitable for your needs, does it contain nuts or other allergens?

These are only some of the questions that are never answered for blind and partially sighted people.

NaviLens technology is changing the landscape of communication and giving people with visual impairments equity to be able to make informed decisions on their purchases.

Marc explains how the technology works with the simple use of an app and a smart phone. We also hear about future aspirations beyond Kellogg's and UK, so that the 2 million people in the UK and the 20 million people in Europe with visual impairments can navigate, shop and cook with confidence.

Find out more

Hosted by Chantal Boyle, Hidden Disabilities Sunflower

Want to share your story? email conversations@hiddendisabilitiesstore.com

Crohns’ disease and Takayasu's with Artie Carden

Sun, 27 Feb 2022 08:00:00 +0000

Crohns’ disease and Takayasu's with Artie Carden

We caught up with Artie who joined us in a Sunflower Conversation back 2020. Artie has hypermobility syndrome, Crohn’s disease and Takayasu's arteritis. After extended bouts of sickness and diarrhoea Artie sought a medical diagnosis, unfortunately it was this was a misdiagnosis of irritable bowel syndrome which was later changed to a Crohn’s.

Artie’s conditions are autoimmune and result in inflammation across the entire body which can be extremely painful. Artie is on a combination of medications and spends a lot of time researching so that when visiting the doctors is already armed with the information to support the treatment plan.

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

Crohn’s and Colitis

Check out Artie's social media pages

Watch and listen to Artie’s first Sunflower Conversation with us.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Acquired brain injury with Brooke Simon

Sun, 20 Feb 2022 08:00:00 +0000

Acquired brain injury with Brooke Simon

TRIGGER WARNING, in this podcast we discuss domestic violence.

Brooke acquired her brain injury at the hands of persistent domestic violence. The trauma she experienced resulted in her losing her sight in one eye, and partially blind in other. She is also partially deaf and uses hearing aids, additionally her mobility has been affected.

Overcoming the extensive physical and psychological injuries she endured, Brooke runs her own business and since her rehabilitation she has had to develop coping strategies to deal with her severe memory loss.

If you are worried about someone, look out for signs that their behaviour has altered, how they interact with people around them and their appearance.

If you are experiencing problems discussed in this podcast contact the following organisations for support:

Australia - Women's Community Shelters
Domestic Violence Counselling Line: 1800 737 732
UK – Refuge
Helpline: 0808 2000 247
USA – Domestic Shelters

Hosted by Paul Shriever, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Epilepsy and surgery with Hannah Wilson

Sun, 13 Feb 2022 08:00:00 +0000

Epilepsy and surgery with Hannah Wilson

Hannah has focal impaired awareness seizures and since we last spoke, 12 months ago, they have got progressively worse. Increasing in frequency and duration. They have also become tonic clonic.

The seizures leave Hannah, bruised, sore and emotionally and physically wiped out. Because of this Hannah has been undergoing to tests which have revealed that she has refractory epilepsy which means that she is drug resistant. There is an opportunity for Hannah to undergo brain surgery, which while is scary she sees it as a golden opportunity to be seizure free.

Hannah works at Asda, but her passion is her volunteer role with St John’s Ambulance.

“I will fight to the very end to be seizure-free.”

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support
Epilepsy Society

Listen to Hannah’s first Sunflower Conversation with us.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Cerebral palsy, learning difficulties, and anxiety with Bryony Moss

Sun, 06 Feb 2022 08:00:00 +0000

Cerebral palsy, learning difficulties, and anxiety with Bryony Moss

Bryony has cerebral palsy and right hemiplegia, which is a paralysis of the right side of the body. She also has learning disabilities, anxiety and non-epileptic seizures.

After receiving her diagnosis when she was academic year two Bryony was given splints to aid her walking along with physiotherapy and educational support which helped enormously.

Unfortunately she suffered bullying and isolation at school which has led to anxiety and PTSD.

In spite of the emotional trauma she is a strong young woman who has a passion for animals and performing arts.

Bryony’s adoptive parents provide her with love, stability and the support that she needs along with a support worker who accompanies her so that she can live an independent life.

Bryony explains how attitudes towards disability need to change - and for everyone to realise that disability isn’t t scary.

If you are experiencing any of the issues discussed in this podcast contact your GP.

For support

Samaritans or call 116 123
Childline or call 0800 1111
CP Teens
Cerebral Palsy Guide - USA

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Dyspraxia, dyslexia and dyscalculia with Fire Phoenix Rising

Sun, 23 Jan 2022 08:00:00 +0000

Dyspraxia, dyslexia and dyscalculia with Fire Phoenix Rising

Fire Phoenix Rising is a poet and has dyspraxia, dyslexia and dyscalculia – or the triple D’s as she affectionately refers to them.

The dyspraxia went undiagnosed during her formative primary school years until her mum read an article about a dyspraxic child and recognised the similarities. Fire Phoenix Rising finds that she has no filter and has difficulty picking up social cues making it difficult to forge friendships. Her coordination is also affected which presents as being clumsy.

Aged 19 she was diagnosed with dyslexia and dyscalculia is still to receive a formal diagnosis.

Fire Phoenix Rising found writing poetry allowed her to express her emotions but at the time had no idea how talented she was. She has won competitions and received funding to film and record her work. Fire Phoenix Rising is very busy and is passionate about shining a light on disability, homelessness and women’s equality. We are delighted that Fire Phoenix Rising is one of the judge’s for the Hidden Disabilities Sunflower 2022 poetry competition Getting around - invisible disabilities and me.

If you are experiencing any of the issues discussed in this podcast contact your GP.

Organisations that offering support

Shelter
Odd Arts
Women’s Voices Movement
Poison Apple Theatre
Back on Track
Changing Futures

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Cerebral Palsy with Peta Hooke

Sun, 09 Jan 2022 08:00:00 +0000

The Sunflower Conversations – Cerebral Palsy with Peta Hooke

Peta has cerebral palsy which affects her mobility. Peta uses a wheelchair as she cannot stand or walk independently, she also uses a hoist to shower.

The cerebral palsy was caused at birth when she experienced a lack of oxygen for few seconds.

At 12 Peta had an operation which went wrong and stretched her nerves too much resulting in chronic nerve pain. Extensive therapy was necessary to re-educate her brain to overcome the pain.

Peta approaches life with determination, her outlook on life is positive and has led her to start her own business as a podcaster on her show called I Can’t Stand. As a Disabilities advocate her aim is to educate everyone about what it is like to have a disability, and remove the ‘pity tilt’ of the head.

In Peta’s words “nothing is wrong, I am just being myself.”

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

Further information

I Can’t Stand podcast

Hosted by Paul Shriever, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Desmoid tumour with MaryBeth Eiler

Sun, 12 Dec 2021 08:00:00 +0000

Desmoid tumour with MaryBeth Eiler
MaryBeth has a rare, aggressive tumour which is called a Desmoid Tumour.
In this conversation we hear about the different types of chemotherapy MaryBeth received and had how the tumour severely affected her mobility.

MaryBeth also talks us through the workplace adjustments that her employer made to accommodate her health condition.

In spite of the anxiety she can experience because of the desmoid tumour she is focused on advocating for a cure or an approved FDA treatment, along with supporting people that have had similar journeys with their health.

If you are experiencing problems discussed in this podcast contact your GP or Primary Care Provider if based in the US.

Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Vascular Ehlers Danlos Syndrome with Erica Baldwin

Sun, 05 Dec 2021 08:00:00 +0000

The Sunflower Conversations podcast - Vascular Ehlers Danlos Syndrome with Erica Baldwin
Erica has Vascular Ehlers Danlos Syndrome (VEDS) – a genetic condition which wasn’t diagnosed until adulthood.

In this conversation we hear how the VEDS affects her body, in particular her internal organs, which caused her to have a major ruptured colon.

During childbirth Erica’s body struggled to cope and she explains how that led to obtaining a diagnosis. Despite the affect to her mental health, physical health and work life Erica is positive and an absolute pleasure to talk to.

If you are experiencing problems discussed in this podcast contact your GP or Primary Care Provider if based in the US.

For support

Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Bowel cancer, LARS syndrome and stoma with Amanda Strother

Sun, 28 Nov 2021 08:00:00 +0000

Bowel cancer, LARS syndrome and stoma with Amanda Strother

Amanda was diagnosed with bowel cancer at 31 years old. After a successful operation to remove the cancer she developed major LARS which meant that not only was she in pain, she also needed to use the toilet between 30 to 40 times a day.

Eventually Amanda elected to undergo further surgery to have a colostomy bag and refers to this as the best decision she ever made. She has named her stoma Hope.

In the conversation Amanda is brilliantly honest and open, we talk about how the stoma works, what it looks like, what she can do, and other people’s perceptions.

Amanda is on a mission to educate and raise awareness of stomas.

If you are experiencing problems discussed in this podcast contact your GP.

For support

Colostomy UK

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

PTSD with Danielle Allen

Sun, 14 Nov 2021 08:00:00 +0000

Suddenly hit by PTSD with Danielle Allen
Danielle Allen is a mum to three children. Her eldest son Louis was born with a congenital heart condition called Coarctation of the aorta.

Suddenly six years later, and following the traumatic experience of Louis undergoing heart surgery at 10 days old, Danielle experienced what she describes as a big black cloud which came from nowhere.

She describes the profound impact that had her and the subsequent diagnosis of Obsessive Anxiety Disorder and PTSD.

For support
Charity:
PTSD UK

The NHS advise that if you or your child are experiencing problems after a traumatic experience, or if the symptoms are particularly troublesome you should contact your GP.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit the Hidden Disabilities Sunflower website.

Radiation caused my hidden disability with Kellie La Follett

Sun, 07 Nov 2021 08:00:00 +0000

Radiation caused my hidden disability with Kellie La Follett
Kellie La Follett was caught in an unexpected mass radiation incident at the school she worked in. Unfortunately Kellie was sitting at the epi centre of the radiation which has left Kellie in pain 24 hours a day that has increased over time.

In-spite of the extreme pain and light sensitivity that Kellie lives with she has campaigned to ensure that an event of this nature cannot occur again.

Kellie uses her experiences to offer support to people in the US, writing blogs and bringing people together, as well as being a keen advocate for the Hidden Disabilities Sunflower in the US.

Find out more about Kellie La Follett

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit the Hidden Disabilities Sunflower website.

Fibromyalgia with Sue McIntosh

Sun, 31 Oct 2021 08:00:00 +0000

On the Road series - Living with Fibromyalgia
Sue McIntosh developed fibromyalgia after being involved in a traffic collision. No longer able to continue her career as an advanced driver in the Police force, she has since learnt how to self manage her symptoms and daily activities, such as driving, shopping and working.

Mindfulness has been hugely beneficial to Sue, as has a change of career into photography as she can fit it around her disability.

Driving now has its limitations, here Sue explains why On the Road with the National Highways and the Sunflower is a good idea.

If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.

For support

Contact
Sue McIntosh Photography on Instagram @suemcintoshphotography

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit the Hidden Disabilities Sunflower website.

On the Road series - Older Drivers Forum

Sun, 24 Oct 2021 08:00:00 +0000

Older Drivers Forum
A national forum made up of a group of organisations that support the older motorist to drive safely for longer. They welcome drivers via their website to be informed and be kept up to date with the latest motoring advice.

Aiming to reduce the number of deaths on the road, they offer superb advice to the older motorist. Their most recent campaign covered eyesight, renewing your licence, dementia, dash cams, electric vehicles and more.

We hear about Driver Refresher courses, which are highly recommended to brush up on skills, build confidence and Driving Mobility refreshers for people that have medical conditions.

Organisations discussed in this podcast:

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit the Hidden Disabilities Sunflower website.

Narcolepsy Cataplexy Dyslexia with Marcus Morgan-Valentine

Sun, 26 Sep 2021 08:00:00 +0000

Let’s talk about intersectional support with Marcus Morgan-Valentine

Marcus Morgan-Valentine has dyslexia, narcolepsy, cataplexy, osteomalacia, chronic costocondritus, dyslexia and IBS . He is a youth worker, and performer, and is passionate about advocating for people that have hidden disabilities.

At the age of 11 he was involved in a car accident and that was when the symptoms of narcolepsy started but he didn’t receive his diagnosis until adulthood.

Our conversation covers the challenges of work, disability and race discrimination and how difficult it is to apply for PIP.

Marcus’ rem sleep is only 4 minutes so when seeking employment he specifically seeks out businesses that support disabled employees and are forward thinking by making adjustments.

We bounce around many subjects in this conversation, Marcus is endearingly funny, honest and open.

If you are experiencing problems discussed in this podcast contact your GP.

For support
Charity:
Narcolepsy UK
British Dyslexia Association

Contact
Marcus Morgan-Valentine: Instagram @totalblessingsuk / Email totalblessings@hotmail.com

Hosted by Chantal Boyle Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit the Hidden Disabilities Sunflower website.

Ehler Danlos Syndrome with Mik Lenth

Sun, 08 Aug 2021 08:00:00 +0000

Ehler Danlos Syndrome with Mik Lenth

Mik Lenth is 19 and lives in the MidWest in the US and has Ehlers Danlos Syndrome (EDS) which affects her connective tissue. The type that Mik has is hypermobility which means that her joints come out of place and dislocate.

Mik talks us through her condition and how it has affected her growing up, particularly at school and how it continued into employment. The symptoms have progressively got worse and has led to several operations on her jaw and knee.

With a good support system Mik doesn’t let her chronic illness hold her back and is looking forward to studying in Madrid this year and advocating for invisible disabilities.

If you are experiencing problems discussed in this podcast contact your GP.

For support
Charity: Ehlers Danlos Support UK.

Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit the Hidden Disabilities Sunflower website.

Supporting families with additional needs

Sun, 01 Aug 2021 09:00:00 +0000

Supporting families with additional needs

Benedict Symcox is CEO of charity, Family Voice Surrey, which is a parent carer forum.

We learn how they engage with parents of children with additional needs, of which there are over 30,000 families in Surrey. They use the lived experiences of real people to help inform the council's policy making and services.

By listening to parents and carers they are able to create mini communities for them to feel supported, as well as offering training.

Organisations discussed in this podcast:

Family Voice Surrey
Family Voice Surrey Facebook group
If you can help with their website (pro-bono) contact contact@familyvoicesurrey.org

Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit the Hidden Disabilities Sunflower website.

Neurodivergent and Tourette Syndrome with Kez Symcox

Sun, 25 Jul 2021 08:00:00 +0000

Neurodiverse and Tourette Syndrome
Kez Symcox is neurodiverse, and has comorbidities, including: autism spectrum disorder, Tourette Syndrome, generalised anxiety disorder, depression, an eating disorder, PTSD traits, chronic fatigue syndrome, functional neurological disorder, and is awaiting an ADHD assessment.

We chat to Kez and her mum, Benedicte, to find out what their normal is. After many years of seeking medical advice and support what becomes clear is how mentally and physically demanding it is for Kez's parents. There always seems to be a battle to get the correct diagnosis which has had it's own impacts on their mental health.

Now that Kez knows what her conditions are it has allowed her to find support and a sense of community through online groups. Looking ahead to the future Kez is passionate about raising awareness of minority issues.

In the words of Benedicte 'It will be okay'.

If you are experiencing issues discussed in this podcast contact your GP.

Organisations discussed in this podcast:

Child and Adolescent Mental Health Services (CAHMS)

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit the Hidden Disabilities Sunflower website.

Aphasia and Epilepsy with Tom Ryan

Sun, 11 Jul 2021 08:00:00 +0000

Aphasia and Epilepsy with Tom Ryan

Tom Ryan-Elliott has epilepsy and aphasia because of a brain injury he received while on holiday in Las Vegas. He has no recollection of the accident and has had several years of rehabilitation.

His epilepsy gives him Simple Focal and Atonic Clonic seizures, and the aphasia affects his speech and language processing. Over time he has developed coping strategies and with the use of technology he is on a mission to re-enter the world of employment.

Now a keen photographer Tom’s moto is ‘never give up’.

If you are experiencing problems discussed in this podcast contact your GP.

Organisations discussed in this podcast:

Tom Ryan-Elliot's photography
For brain injuries - Headway
For aphasia - Aphasia Re-connect

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit the Hidden Disabilities Sunflower website.

Mitral heart valve replacement and asthma with Paul Shriever

Sun, 04 Jul 2021 08:00:00 +0000

Open heart surgery and asthma with Paul Shriever

In this podcast we talk to Hidden Disability Sunflower team member - Paul Shriever.

Paul chats about his own invisible disabilities - in his thirties with a young family Paul was admitted to A&E and told that he needed life saving open heart surgery- the treatment he received was a mitral heart valve replacement (titanium).

The trauma of this experience and also being asthmatic from an early age has caused Paul a great deal of anxiety. Overtime he has learnt coping mechanisms and readdressed the balance in his life both physically and mentally.

If you are experiencing problems discussed in this podcast contact your GP.

To find out more about asthma, check out Asthma UK, a charity that offers information and support to people with asthma. You can also call the charity's helpline team on 0300 222 5800.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Visit the Hidden Disabilities Sunflower website.

Autism, ADHD, Anxiety and PCOS with Saxon Boone

Sun, 27 Jun 2021 08:00:00 +0000

Autism, ADHD, Anxiety and PCOS with Saxon Boone

Saxon Boone lives in Canada. Saxon finally received her diagnosis of autism after teachers thought that she was a problem child. Additionally she has ADHD, anxiety and Poly Cystic Ovarian Syndrome (PSOC).

Her health conditions are intertwined and the medication she takes to balance her hormones for PSOC can affect her mood which then affects her other conditions.

Saxon shares with us her coping mechanisms to help her navigate her daily life and her hopes for the here and now and the future.

Hosted by Paul Shriever, Hidden Disabilities Sunflower.

Visit the Hidden Disabilities Sunflower website.

Anxiety and Depression with Maddie White

Sun, 20 Jun 2021 15:00:00 +0000

Anxiety and Depression with Maddie White

Maddie White has anxiety and depression which sometimes makes it difficult for her to navigate daily life, especially when out in a public place on her own. Maddie often feels uncomfortable if she needed to ask a stranger for help finding something in a shop or asking for directions if unsure of where to go, when taking public transport.

In this conversation, Maddie tells us how wearing the Sunflower has made things a lot easier. She feels that staff in businesses and organisations that recognise and support the Sunflower are more mindful and aware, making her feel more secure as she passes through airports or does her weekly shop.

Hosted by Paul Shriever, Hidden Disabilities Sunflower

Fibromyalgia, depression and borderline personality disorder with Paul Pengelly

Mon, 07 Jun 2021 09:00:00 +0000

Either Off or On - living with Fibromyalgia with Paul Pengelly
In this Sunflower Conversation, Paul Pengelly discusses how fibromyalgia impacts his physical and mental health.

It took almost three years for Paul to be diagnosed and his acceptance of his condition has been key to making adjustments, from pacing his life to using a scooter as well as making useful changes to his home environment.

We talk about how fibromyalgia is intrinsically linked to his mental health and that this has progressed in line with his condition. In Paul’s own words “I’m either off or on … there’s no in-between.”

Paul is a Sunflower Champion and has been a Sunflower wearer and advocate for the last few years. He is an admin of the Sunflower Lanyard Advocacy group on Facebook, one the Sunflower Support groups that highlights the use of the Sunflower lanyard for non-visible disabilities.

The NHS advises that if you think you have fibromyalgia to visit your GP.

To find out more about fibromyalgia, check out Fibromyalgia Action UK, a charity that offers information and support to people with fibromyalgia. You can also call the charity's helpline on 0300 999 3333.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.

PTSD and brain injury with Darren Carew

Sun, 06 Jun 2021 09:00:00 +0000

PTSD with Darren Carew

Darren Carew was a career solider in the Army until an accident occurred which would change his life forever. In this conversation Darren explains how his whole world was turned upside down by the accident which has left him an amputee with a mild brain trauma, dyscalculia and PTSD. We talk about the impact his conditions have had on him and his family.

Darren has since gone on to forge a new career as Disability Rugby Coordinator with the Welsh Rugby Union Group. He works with all ages in the community and puts inclusion at the heart of everything he does.

In Darren’s own words “I’m 100% a better person for my experiences.”

You can find out more disability projects that Darren by contacting him on Twitter @DisRugbyDC

For support
Charity:
PTSD UK

The NHS advise that if you or your child are experiencing problems after a traumatic experience, or if the symptoms are particularly troublesome you should contact your GP.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.

Visit the Hidden Disabilities Sunflower website.

Autism and Alcohol with Matthew Tinsley

Sun, 30 May 2021 08:00:00 +0000

Autism and Alcohol with Matthew Tinsley
Matthew Tinsley has a degree in Modern Languages and had a long career as a bookseller in independent bookshops.

In this conversation Matthew explains how his alcohol addiction and his diagnosis of Asperger Syndrome Condition are linked.

After many years struggling with alcoholism and two failed marriages, he overcame his addiction - largely due to his self-awareness of his autistic spectrum condition, together with a long period in rehab using cognitive behavioural therapy.

Matthew has co-written a book with autism specialist, Sarah Hendrickx called Asperger Syndrome and Alcohol, Drinking to Cope.

If you are affected by addiction please speak to your GP or approach a local treatment service.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

Autistic, Dyspraxic and Microdeletion on a chromosome with Lorina

Sun, 23 May 2021 08:00:00 +0000

Autistic, Dyspraxic and Microdeletion on a chromosome with Lorina

Lorina is 18 years old is autistic and dyspraxic, and also has a rare condition called microdeletion on a chromosome. These conditions mean that she has learning difficulties and has struggled to socialise and understand social cues from people.

After being told that it was unlikely that she would be able to ride a bike due to balance and gross motor skills, Lorina started skiing 3 ½ years ago and joined the Special Olympics Great Britain (SOGB) in 2018.

As well as winning Gold in Slalom, Bronze in Super G and Gold in Giant Slalom, in her category, it has improved her confidence and sense of belonging. Lorina now has a community of friends that are athletes based all over the country.

Find out more about the Special Olympics

Hosted by Paul Shriever, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

Inclusive shopping experience at The Trafford Centre

Tue, 11 May 2021 07:00:00 +0000

Inclusive shopping experience at The Trafford Centre

Zoe Inman, the Centre Director at one the UK’s largest shopping centres, The Trafford Centre, talks to us about why disability inclusion is so important to them. The Hidden Disabilities Sunflower is integral to their wide-reaching accessibility program that includes staff training and development across a range of disabilities to support their customers and one another.

The government guidelines during the pandemic put huge pressure on retail staff to protect their customers but also themselves which is why they have adopted social distance awareness campaign, Please give me space.

They have listened to customer feedback and are pulling out all the stops welcoming everyone back through their doors. You can obtain a Sunflower lanyard from their customer service desk.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

Visit the Please give me space website.

ADHD, Epilepsy, PTSD and Autism with Mark Charlesworth

Sun, 02 May 2021 08:00:00 +0000

ADHD, Epilepsy, PTSD and Autism with Mark Charlesworth

Mark Charlesworth has a multitude of health conditions including, autism, ADHD, epilepsy and PTSD that were diagnosed later in life.

In this conversation we hear how Mark has altered his working pattern to his advantage. He now advises businesses to recognise the talents that exist in neuro diverse employees and how to support them.

Mark also describes his experiences with wearing the Sunflower and how it has given him a sense of security when going out.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

Dyspraxia, ADHD, Dyscalculia and Damp with Bailey

Sun, 25 Apr 2021 09:00:00 +0000

Dyspraxia, ADHD, Dyscalculia and Damp with Bailey

Bailey is in a mainstream secondary school and has the following health conditions, dyspraxia, attention deficit disorder, dyscalculia and DAMP which means Deficits in Attention, Motor Control and Perception.

Parents, Steven and Aneeta, tell us how Bailey has exceeded the limitations of her diagnosis with support from them. Bailey’s experiences at school made her decide to use her artistic talent to raise awareness and acceptance of hidden disabilities. She has designed some clothing using impactful language related to how she feels.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

The Brighton COVID NHS Mass Vaccination Centre

Sun, 18 Apr 2021 07:00:00 +0000

The Brighton COVID NHS Mass Vaccination Centre, Sussex Community NHS Foundation Trust

With up to 3,000 vaccines administered a day, The Brighton Vaccination Centre is the largest hub in Sussex. Staff have received the Hidden Disabilities Sunflower training and have been welcoming people through their doors.

With that many appointments every day it is a slick operation. The pandemic has been incredibly difficult for everyone and the NHS want to protect as many people as they can. Clinical Nurse Manager, Susie, explains why it is important that people with hidden disabilities feel at ease, recognizing the Sunflower means that they can offer that extra time and understanding.

Hidden Disabilities Sunflower is working with the NHS to support people with hidden disabilities during the vaccine roll-out by providing free Hidden Disabilities Sunflower training and products to NHS vaccination centres.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

Autistic Spectrum Disorder family support with Sarah Hughes

Sun, 11 Apr 2021 08:00:00 +0000

How does the Sunflower help families with autisitc spectrum disorder? with Sarah Hughes

In her final dissertation for a Master of Science in Psychology, Sarah Hughes researched the experiences of eight families with autistic members to explore the barriers that exist to everyday life and how choosing to wear the Sunflower could potentially help. Sarah found that the parents valued the Sunflower as it reduced unwanted comments from strangers as well as feeling that they needed to explain the behaviour of their children. The parents in Sarah’s study also discovered that once people recognised the Sunflower, they would stop judging and instead of expecting the child to change, they adjust their own behaviour and expectations.

Hosted by Paul Shriever, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

The Autism Employment Gap

Wed, 31 Mar 2021 13:00:00 +0000

Not every autistic person is the same, everyone is different, as are the variety of occupations available to all of us. So, we ask “why is the employment gap for autistic people so vast?”

In this podcast we are joined by Mike Adams of Purple, Matt Putts of Employment Horizons and Paul White, Hidden Disabilities Sunflower, to discuss what barriers currently exist to employment, not just for autistic people but disabled people in general, and how easy it is to remove them.

Embracing diversity and different thinking brings huge value to an organisation and its talent pool that will only make it richer.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

Autism and comordities with Maria Cook

Sun, 28 Mar 2021 08:00:00 +0000

Autism and comordities with Maria Cook
Maria Cook is very candid about the multitude of hidden disabilities that her son, Ryan, has. They include autism, development delay, significant learning disabilities, sensory processing disorder, sensory modulation difficulties, hyperacusis and synesthesia.

Maria is Ryan’s champion and voice as she has had to navigate the various diagnosis’ and adapt to the challenges of Ryan’s conditions. Nothing is insurmountable for this family and we get a real insight to what their life is like and what they have overcome together.

Hosted by Paul Shriever and Ruth Rabet, Hidden Disabilities Sunflower.

Visit the Hidden Disabilities Sunflower website.

Understanding, acceptance, and empowerment with Mark Isherwood Elected Regional Member of the Senedd

Sun, 07 Mar 2021 08:00:00 +0000

Mark Isherwood, Elected Regional Member of the Senedd, (Welsh Parliament), explains how the pandemic has affected people of all ages, in particular people from disadvantaged groups. Reduced accessibility to support, education and even shopping has had a big impact.

Mark is a champion of the social model that advocates for making societal changes to ensure a fairer more equal society for people with disabilities.

We also talk about Please give me space. A social distancing awareness campaign to help anyone experiencing challenges to maintain a safe space. Launched by the Hidden Disabilities Sunflower and the RNIB.

Hosted by Paul Shriever and Chantal Boyle from Hidden Disabilities Sunflower.

Visit the Hidden Disabilities Sunflower website.

Visit the Please give me space website.

FASD with Mick Jewell

Sun, 28 Feb 2021 08:00:00 +0000

Nurtured children with hidden pasts and FASD with Mick Jewell
Mick Jewell shares his personal journey of changing career to become a foster parent with his wife Sian, to children with emotional and behavioural challenges. Through his experiences, Mick has developed an extensive knowledge of Foetal Alcohol Syndrome as well as strategies to help bring confidence and balance to young people’s lives.

Mick offers us a very honest insight to what has been, and continues to be, a rewarding journey looking after children from the ages of 4 to 17.

Hosted by Paul Shriever and Chantal Boyle from Hidden Disabilities Sunflower.

Charity support:
National Organisation for FASD

Visit the Hidden Disabilities Sunflower website.

The events industry and the pandemic

Sun, 21 Feb 2021 08:00:00 +0000

There is no doubt that the pandemic has had a significant impact on the events industry. With Covid Rangers at markets to marshalling at testing centres, Sam Birtwell, from Phoenix Events East, an events company that would normally cover security, stewarding, and traffic management, discusses how they have adapted in response to the pandemic to support their community with the help of the Sunflower and 'Please give me space'.

Hosted by Chantal Boyle and Paul Shriever from Hidden Disabilities Sunflower.

Visit the Hidden Disabilities Sunflower website.

Visit the Please give me space website.

Epilepsy with Hannah Wilson

Sun, 14 Feb 2021 09:00:00 +0000

Epilepsy with Hannah Wilson
Epilepsy can affect people in different ways. Hannah Wilson shares her personal experiences of growing up with the condition - how it has had an impact on her education as well as on employment and her independence. Hannah describes her seizure triggers, SUDEP and how important it is to be open with employers and break down barriers to employment.

Hosted by Chantal Boyle and Paul Shriever from Hidden Disabilities Sunflower.

The Sunflower Conversations

Sun, 07 Feb 2021 08:00:00 +0000

The Sunflower Conversations deliver a deeper understanding of the Sunflower's role in supporting people with hidden disabilities. The topics are often personal and explore hidden disabilities through the prism of the Sunflower with guests hosted by members of the Hidden Disabilities Sunflower team. Making the invisible, visible.