Beyond the Count

ITP Australia and New Zealand

Beyond the Count is a podcast about life with Immune Thrombocytopenia (ITP). Through personal stories, expert interviews and practical advice, each episode explores the everyday challenges and small wins of living with a rare autoimmune condition. Whether you’re newly diagnosed, supporting someone, or just looking to learn more, this podcast is here to inform, support and connect.

  1. Decoding Risk Series: Part 2 - Why Medication Leaflets Look So Terrifying

    24 июн.

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

    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 trialswhy every symptom gets documented, even when it may not be caused by the medicationwhat statements like “1 in 9 people experienced this” really meanwhy population statistics are not personal predictionsand 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. 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 info@itpaustralia.org.au

    19 мин.
  2. Watch and Wait: Why doing nothing is sometimes the best medicine.

    10 июн.

    Watch and Wait: Why doing nothing is sometimes the best medicine.

    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 lifeWhy many children recover without treatmentHow clinicians assess bleeding risk rather than relying on platelet counts aloneThe signs and symptoms parents should be monitoring at homeWhen treatment becomes necessary and what that looks likeHow to support your child to live as normally and safely as possibleThis 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 info@itpaustralia.org.au

    26 мин.
  3. Decoding Risk Series: Part 1 - Why Side Effects Happen

    8 июн.

    Decoding Risk Series: Part 1 - Why Side Effects Happen

    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 bodyHow “off-target effects” lead to common side effectsWhy some treatments may feel like they are “working too well”What infusion reactions actually are and why they happenHow your liver and kidneys process medications after they’ve done their jobThis 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 info@itpaustralia.org.au

    26 мин.
  4. Blood Clots in ITP: What Patients Need to Know

    13 мая

    Blood Clots in ITP: What Patients Need to Know

    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 clottingThe real risk of DVT (deep vein thrombosis), pulmonary embolism, stroke, and other clotting complicationsCommon symptoms of blood clots and when to seek medical attentionHow anticoagulants (blood thinners) can be used safely in ITPThe role of treatments like TPO receptor agonists (TPO-RAs) and their impact on clotting riskWhat patients need to know about clotting risk after splenectomyDr 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 info@itpaustralia.org.au

    25 мин.

  5. 29 апр.

    "But You Don't Look Sick": The Invisible Reality of Living with ITP

    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 info@itpaustralia.org.au

    30 мин.
  6. The 2026 ITP Patient Conference Highlights

    15 апр.

    The 2026 ITP Patient Conference Highlights

    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 info@itpaustralia.org.au

    41 мин.
  7. The Bruise That Stopped Me

    11 мар.

    The Bruise That Stopped Me

    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 info@itpaustralia.org.au

    14 мин.
  8. What It’s Like to Be Diagnosed with ITP as a Kid with Connor & Kim

    25 февр.

    What It’s Like to Be Diagnosed with ITP as a Kid with Connor & Kim

    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 info@itpaustralia.org.au

    35 мин.
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Об этом подкасте

Beyond the Count is a podcast about life with Immune Thrombocytopenia (ITP). Through personal stories, expert interviews and practical advice, each episode explores the everyday challenges and small wins of living with a rare autoimmune condition. Whether you’re newly diagnosed, supporting someone, or just looking to learn more, this podcast is here to inform, support and connect.

Информация

  • Автор
    ITP Australia and New Zealand
  • Годы выхода
    2025 - 2026
  • Выпуски
    26
  • Ограничения
    С ненормативной лексикой
  • Авторские права
    © 2026 ITP Australia Ltd
  • Сайт подкаста
    Beyond the Count

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