In this episode of Beyond the Count, Danielle Boyle is joined by leading haematologist Dr Rob Bird to demystify clinical trials for people living with Immune Thrombocytopenia (ITP). Together, they explain what clinical trials are, how they are designed, the different trial phases, and what participation really involves. They also explore the potential benefits and risks, the importance of informed consent, and why patient wellbeing, fatigue, and quality of life are now key measures in modern clinical research.

Whether you're considering a clinical trial, curious about how new ITP treatments are developed, or simply want to better understand your options, this episode provides practical, balanced information to help you make informed decisions.

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Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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You know the feeling. You open a medication leaflet, and suddenly you’re staring at pages of tiny print and an endless list of side effects that make you wonder, “How is this medication even considered safe?”

In Part 2 of the Decoding Risk series, Danielle Boyle is joined by haematologist Dr Danny Hsu to break down why medication leaflets look the way they do and what patients actually need to understand when reading them.

Together, they unpack:

• how side effects are reported during clinical trials
• why every symptom gets documented, even when it may not be caused by the medication
• what statements like “1 in 9 people experienced this” really mean
• why population statistics are not personal predictions
• and how online forums can sometimes amplify fear and worst-case thinking.

Dr Hsu also shares practical advice on how to navigate medication information more confidently, including what side effects are actually important to focus on, how severity is graded, and the questions patients should ask their healthcare team before starting treatment.

This episode is designed to help patients move from fear to understanding, so treatment decisions feel clearer, calmer, and far less overwhelming.

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Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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In this episode of Beyond the Count, Danielle Boyle is joined by paediatric haematologist Dr Melanie Jackson to explain why observation-based care is often the safest and most appropriate first step for children with ITP.

Together, they discuss:

• What “watch and wait” actually means in real life
• Why many children recover without treatment
• How clinicians assess bleeding risk rather than relying on platelet counts alone
• The signs and symptoms parents should be monitoring at home
• When treatment becomes necessary and what that looks like
• How to support your child to live as normally and safely as possible

This episode provides clear, practical guidance for parents navigating early diagnosis. It helps reframe “doing nothing” as active, evidence-based care, while giving families the tools and confidence to monitor, support, and advocate for their child.

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Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Starting a new treatment for ITP can feel overwhelming, especially when side effects enter the conversation. For many patients, it’s not just the treatment itself that creates uncertainty; it’s the “what if.”

In Part 1 of the Decoding Risk series, host Danielle Boyle is joined by haematologist Dr Danny Hsu to break down why side effects happen in the first place.

Using clear, relatable analogies, they explore:

• Why medications can affect more than one pathway in the body
• How “off-target effects” lead to common side effects
• Why some treatments may feel like they are “working too well”
• What infusion reactions actually are and why they happen
• How your liver and kidneys process medications after they’ve done their job

This episode helps you move beyond fear and into understanding. You’ll learn why side effects are often predictable, why they do not mean something has gone wrong, and how to approach them with confidence.

If you’ve ever read a medication leaflet and felt anxious or experienced a side effect and wondered what it means, this episode will give you the clarity, reassurance, and language to have better conversations with your healthcare team.

Support the show

Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

📱 Follow us on social media:
Instagram: @ITP_ANZ
Facebook: facebook.com/ITPANZ
LinkedIn: ITP Australia & New Zealand
YouTube: @ITPANZ

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Do you have feedback or a story to share? We’d love to hear from you. Get in touch at info@itpaustralia.org.au

Most people living with Immune Thrombocytopenia (ITP) are taught to focus on bleeding risk. But what many don’t realise is that ITP can also increase the risk of blood clots, even when platelet counts are low.

In this episode of Beyond the Count, host Danielle Boyle speaks with leading haematologist Dr Robert Bird to unpack the complex relationship between ITP and clotting.

Together, they explore:

• Why blood clots can occur in ITP and how antibodies may make platelets “stickier”
• Why low platelet counts do not protect against clotting
• The real risk of DVT (deep vein thrombosis), pulmonary embolism, stroke, and other clotting complications
• Common symptoms of blood clots and when to seek medical attention
• How anticoagulants (blood thinners) can be used safely in ITP
• The role of treatments like TPO receptor agonists (TPO-RAs) and their impact on clotting risk
• What patients need to know about clotting risk after splenectomy

Dr Bird also shares practical advice on reducing risk, recognising early warning signs, and having open conversations with your healthcare team.

This episode breaks down complex medical concepts into clear, real-world guidance so you can better understand your risk and feel confident navigating treatment decisions.

Whether you’re newly diagnosed with ITP, managing long-term treatment, or supporting someone with the condition, this episode will give you the clarity and reassurance you need.

Support the show

Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Together, they explore what it feels like to hear “But you don’t look sick,” the exhaustion of constantly explaining a rare disease, and the hidden symptoms that shape daily life, from fatigue and bruising to anxiety, cognitive fog, and the mental load of always being on alert.

Stassi shares her lived experience with honesty and humour, offering insight into the invisible challenges many patients face and the pressure to appear “fine” even when everything hurts.

This episode is a reminder that invisible does not mean imaginary, and that every person living with ITP deserves to be believed, supported, and understood.

Keywords: ITP, invisible illness, chronic illness, fatigue, bruising, mental health, rare disease, patient stories, emotional wellbeing, autoimmune disease

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Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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The 2026 ITP Australia & New Zealand Patient Conference brought together clinicians, researchers, nurses, and patients for a powerful day of learning, connection, and community. In this special highlights episode of Beyond the Count, host Danielle Boyle walks you through the most impactful moments from the event — including breakthroughs in platelet function research, new insights into treatment side effects and risk, adolescent ITP challenges, women’s health and menopause, shared decision‑making, and myth‑busting with leading haematologists.

Featuring direct quotes from presenters including Professor Elizabeth Gardiner, Dr Danny Hsu, Dr Melanie Jackson, Dr Sara Ng, Associate Professor Phil Choi, and Nurse Practitioner Rebecca Dring, this episode brings the conference to life for anyone who couldn’t attend. Whether you’re a patient, carer, or healthcare professional, you’ll gain clarity, confidence, and a deeper understanding of the evolving landscape of ITP care.

Support the show

Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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A single unexplained bruise can stop you in your tracks — no matter how long you’ve been living with ITP. In this deeply personal episode, Danielle shares the story of a large bruise she discovered while visiting her family overseas, and the intense 30-minute spiral that followed.

From the instant fight‑or‑flight response to the familiar rush of “What’s my platelet count?” thinking, she opens up about the emotional conditioning that begins on day one of diagnosis and never fully disappears.

Through raw honesty and gentle reflection, Danielle explores why these reactions are so normal for people living with ITP, how the nervous system remembers past fear even when the present is safe, and what helped her ground herself before realising the bruise had a simple, non-ITP cause.

This episode is a reminder that even the most experienced, stable, and knowledgeable patients still have moments of doubt — and that none of us ever have to face them alone.

Support the show

Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Do you have feedback or a story to share? We’d love to hear from you. Get in touch at info@itpaustralia.org.au

Being diagnosed with Immune Thrombocytopenia (ITP) as a child can be confusing, frightening and life‑changing — not just for kids, but for their parents too. In this episode of Beyond the Count, Danielle sits down with Connor and his mum Kim to share their honest, heartfelt story of what those early days were really like.

Connor talks about the first signs that something wasn’t right — unusual bruises during footy, a strange rash on his shoulders, and the moment a small knock caused his tongue to turn black. He describes the fear and confusion of hospital visits, blood tests and hearing the words “you have ITP” for the first time. 

Kim offers the parent perspective, reflecting on the instinct that something was wrong, the anxiety of waiting for answers, and the challenge of trying to keep life normal while navigating restrictions, school changes and the emotional toll on the whole family. 

Together, they share how ITP affected Connor’s daily life — from missing sport and feeling isolated at school to dealing with fatigue and the frustration of not being able to do the things he loved. They also talk about the turning point that came with starting treatment, the support they received from teachers and the ITP community, and how life slowly opened back up again.  

This episode is full of honesty, courage and hope. It reminds kids that it’s okay to feel scared or confused, and it reassures parents that their instincts, questions and advocacy truly matter. Most importantly, it shows that with the right support, kids with ITP can still live active, joyful and confident lives.

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For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Rebecca shares what it’s really like to support patients beyond the platelet count — from helping families understand complex information in simple terms to offering reassurance during flare‑ups, treatment changes or moments of uncertainty. She explains how nurses bridge the gap between clinicians and patients, advocate for shared decision‑making, and create a safe space where people feel heard, understood and supported.

Through real‑world examples and heartfelt reflections, this episode highlights the compassion, communication and practical guidance that nurses bring to every appointment, phone call and treatment day. Whether you’re newly diagnosed or have been living with ITP for years, this conversation offers insight into the vital partnership between nurses and the ITP community — and why their role is so central to patient wellbeing.

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Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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ASH 2025 delivered some of the most exciting developments the ITP community has seen in years. In this special highlights episode of Beyond the Count, Danielle takes you inside the world’s largest haematology conference to explore the research, conversations and global collaboration shaping the future of ITP care.

Across four days in Orlando, more than 30,000 experts gathered to share new discoveries. Danielle breaks down the key updates, including early CAR T‑cell therapy results, new insights into BTK inhibitors like Rilzabrutinib, important data on women’s health and fatigue, and the late‑breaking VAYHIT2 trial investigating ianalumab with eltrombopag.

You’ll also hear short audio insights from global ITP leaders — Associate Professor Phil Choi, Professor Dr Nichola Cooper, Dr Michele Lambert and Taylor Bowles from the PDSA — offering their perspectives on the most meaningful research and posters presented this year.

This episode also highlights why patient organisations like ITPANZ attend international conferences: to advocate for the patient voice, build global partnerships and bring the latest knowledge home to Australia and New Zealand.

Whether you are newly diagnosed or simply curious about what is coming next, this episode offers a clear and hopeful look at the breakthroughs emerging in ITP research.

Support the show

Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Understanding Immune Thrombocytopenia (ITP) can feel overwhelming, especially in the early days after diagnosis. In this episode of Beyond the Count, Consultant Haematologist Dr Sara Ng joins Danielle to break down the essentials of ITP in simple, reassuring language.

Together, they explore what platelets do, why the immune system sometimes targets them, and how doctors diagnose ITP through a process of exclusion. Sara explains the differences between acute, persistent, and chronic ITP, the symptoms patients may notice, and how fatigue and brain fog fit into the picture.

They also discuss the wide range of experiences people have with ITP, why platelet counts alone never tell the full story, and how to understand the difference between symptoms of the condition and side effects of treatment.

Whether you are newly diagnosed, supporting a loved one, or simply looking to better understand ITP, this episode offers practical insights, compassionate guidance, and the foundational knowledge every patient should have.

In this episode of Beyond the Count, we break down what ITP is, how it’s diagnosed, and what it means for everyday life.

Read more about the I-WISh Results

Review the ITP Treatment Information Sheets

Search ITP Clinical Trials here

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Tina explains why ITP is always a diagnosis of exclusion, what doctors look for during assessment, and how factors like bleeding, age, symptoms, and family anxiety influence treatment choices. She walks us through first‑line options such as steroids and IVIG, the realities of side effects, and when second‑line therapies may be considered for children with persistent or chronic ITP.

This episode offers clear, compassionate guidance for parents navigating a new diagnosis — with practical insights, reassurance, and a reminder that most children recover well, often without treatment.

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For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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In this episode of Beyond the Count, host Danielle Boyle speaks with Dr Danny Hsu, Consultant Haematologist at Liverpool Hospital and Medical Advisor to ITP Australia and New Zealand. Danny explains how medical advisors help shape treatment guidelines, support patient organisations, and translate complex medical information into clear, practical language for families.

The conversation highlights how advisors strengthen trust between patients and clinicians, contribute to advocacy and education, and provide reassurance that care is guided by experts. This episode offers insight into the human side of expertise and why medical advisors are such an important part of the ITP community.

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For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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In this episode of Beyond the Count, host Danielle Boyle speaks with Associate Professor Dr Chris Barnes, Paediatric Haematologist at the Royal Children’s Hospital in Melbourne and Medical Advisor to ITP Australia and New Zealand. 

Together, they explore how ITP presents in children under five, why spontaneous remission is common, and what parents should watch for when it comes to bleeding and head knocks.

The conversation also covers practical tips for balancing safety with letting kids be kids, preparing daycare and playgroup staff with the correct information, and knowing when to worry versus when to relax. This episode offers clarity, reassurance, and expert guidance to help families navigate the early months of ITP with confidence.

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For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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In this episode of Beyond the Count, host Danielle Boyle sits down with Dr Melanie Jackson, Paediatric Haematologist at the Queensland Children’s Hospital and Medical Advisor to ITP Australia and New Zealand, to unpack what a new diagnosis really means.

Together, they explore the basics of Immune Thrombocytopenia (ITP), what parents can expect in the first few weeks, and why treatment isn’t always the immediate next step. Dr Jackson also shares practical advice on how to talk to children about their diagnosis in ways that build trust and reassurance, while addressing common feelings of guilt and uncertainty.

This conversation is designed to give families clarity, confidence, and comfort as they navigate the early days of paediatric ITP.

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Caroline shares how the Alliance began, why global collaboration matters in rare diseases, and how bringing together patient organisations from around the world is helping to raise awareness, share resources and strengthen support for people with ITP everywhere.

We also examine some of the Alliance’s major milestones to date, including ITP Awareness Week, and how resource sharing and collaboration have helped drive change in over 30 countries worldwide.

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For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Getting diagnosed during a pandemic wasn’t easy, but ITP Warrior @The.No.Spleen.Queen, Danielle Hodges, knew something didn’t feel right.

In this episode, she walks us through why she decided to get a second opinion on her ITP diagnosis, what changed as a result, and why trusting your instincts as a patient matters. 

If you’ve ever felt unsure about your diagnosis or treatment plan, this one’s for you.

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For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Support the show

Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Being diagnosed with ITP as a teenager can feel overwhelming, and finding the right information at the right time makes a big difference. In this episode, Danielle speaks with Professor Nichola Cooper, Dr Alice Hart, and Mervyn Morgan about ITP and Me: A Teen Guide to Living with ITP.

They share how the book was developed with teens, for teens, why age-appropriate resources matter, and how hearing directly from young people has helped shape a resource that is both practical and reassuring. Whether you’re a teen, a parent, or part of a healthcare team, this conversation highlights the impact of collaboration and the importance of giving young people a voice in their care.

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For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Support the show

Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Support the show

Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Support the show

Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Support the show

Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Support the show

Thanks for listening to Beyond the Count

For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Support the show

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From dental visits and diet myths to long-haul travel, fatigue and exercise, this episode is packed with clear, practical advice grounded in clinical experience. Dr Bird shares why bleeding gums aren’t always caused by low platelets, how to prepare for travel, and what types of exercise are safe for people with ITP. He also busts a few common misconceptions and highlights the importance of checking in with your haematologist before making changes to your routine.

Whether you’re newly diagnosed or just looking for everyday guidance, this is a great place to start.

Support the show

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For more information, resources and lived experiences about Immune Thrombocytopenia (ITP), visit ITPANZ.org.au.

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Do you have feedback or a story to share? We’d love to hear from you. Get in touch at info@itpaustralia.org.au