Clinical trials can feel complicated, overwhelming, and sometimes even a little intimidating. Yet every treatment available today has reached patients because people chose to participate in clinical research.

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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Do you have feedback or a story to share? We’d love to hear from you. Get in touch at [email protected]

Decoding Risk Series — Part 2: Why Medication Leaflets Look So Terrifying

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.

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

🎧 Subscribe to Beyond the Count on your preferred podcast platform so you never miss an episode.

Do you have feedback or a story to share? We’d love to hear from you. Get in touch at [email protected]

For many parents, hearing that their child has ITP is overwhelming. But what can feel even more confronting is being told that the best approach might be to “watch and wait.”

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.

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

🎧 Subscribe to Beyond the Count on your preferred podcast platform so you never miss an episode.

Do you have feedback or a story to share? We’d love to hear from you. Get in touch at [email protected]

Why Side Effects Happen | Decoding Risk (Part 1)

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

🎧 Subscribe to Beyond the Count on your preferred podcast platform so you never miss an episode.

Do you have feedback or a story to share? We’d love to hear from you. Get in touch at [email protected]

Blood Clots in ITP: What Patients Need to Know | Beyond the Count Podcast

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.

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

🎧 Subscribe to Beyond the Count on your preferred podcast platform so you never miss an episode.

Do you have feedback or a story to share? We’d love to hear from you. Get in touch at [email protected]

ITP is often called an “invisible illness”, and for many patients, the hardest battles are the ones no one else can see. In this episode of Beyond the Count, Danielle speaks with longtime volunteer and ITP patient, Stassi Austin, about the emotional and physical realities that rarely show on the outside.

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

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

🎧 Subscribe to Beyond the Count on your preferred podcast platform so you never miss an episode.

Do you have feedback or a story to share? We’d love to hear from you. Get in touch at [email protected]

Highlights, Insights and the Voices Shaping Our Future 

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.

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

🎧 Subscribe to Beyond the Count on your preferred podcast platform so you never miss an episode.

Do you have feedback or a story to share? We’d love to hear from you. Get in touch at [email protected]

A moment of fear, a rush of memories, and the truth about living with ITP — even on the “good” days.

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.

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

🎧 Subscribe to Beyond the Count on your preferred podcast platform so you never miss an episode.

Do you have feedback or a story to share? We’d love to hear from you. Get in touch at [email protected]

Connor and his mum, Kim, share their story of bruises, hospital visits and finding confidence again after an ITP diagnosis.  

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.

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

🎧 Subscribe to Beyond the Count on your preferred podcast platform so you never miss an episode.

Do you have feedback or a story to share? We’d love to hear from you. Get in touch at [email protected]

Haematology nurses are often the steady voice, the calm presence and the guiding hand that patients rely on throughout their ITP journey. In this episode of Beyond the Count, Danielle is joined by Haematology Nurse Practitioner Rebecca Dring, who works across the Royal Melbourne Hospital and the Peter MacCallum Cancer Centre, to shine a light on the essential role nurses play in ITP care.

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.

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

🎧 Subscribe to Beyond the Count on your preferred podcast platform so you never miss an episode.

Do you have feedback or a story to share? We’d love to hear from you. Get in touch at [email protected]