Beyond the Count

ITP Australia and New Zealand
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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. The Bruise That Stopped Me

    3D AGO

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

    FEB 25

    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 min
  3. Living with ITP: How our haematology nurses play a vital role in bridging the gap in care.

    FEB 11

    Living with ITP: How our haematology nurses play a vital role in bridging the gap in care.

    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 info@itpaustralia.org.au

    34 min
  4. ASH 2025 Highlights: Progress, Possibilities & What’s Ahead for ITP

    JAN 21

    ASH 2025 Highlights: Progress, Possibilities & What’s Ahead for ITP

    A global overview of new treatments, real-world data and patient-centred research.   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. 📱 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

    21 min
  5. ITP Explained: The Basics Every Patient Should Know

    JAN 14

    ITP Explained: The Basics Every Patient Should Know

    Clear answers on diagnosis, symptoms, and living with Immune Thrombocytopenia (ITP) 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 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

    38 min
  6. ITP in Kids Series: When to Treat and What to Expect

    12/23/2025

    ITP in Kids Series: When to Treat and What to Expect

    Deciding when — or whether — to treat a child with ITP can feel overwhelming for families. In this episode of Beyond the Count, Associate Professor Dr Tina Carter, Paediatric Haematologist at Perth Children’s Hospital, brings more than 30 years of experience to help parents understand how clinicians make these decisions. 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. 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

    29 min
  7. Making Complex Simple: How Medical Advisors Support the ITP Community

    12/10/2025

    Making Complex Simple: How Medical Advisors Support the ITP Community

    Medical advisors play a crucial role in rare disease care, ensuring patients are not only treated but truly understood. 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. 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

    39 min
  8. ITP in Kids Series: ITP and Toddlers

    11/26/2025

    ITP in Kids Series: ITP and Toddlers

    When a toddler is diagnosed with Immune Thrombocytopenia (ITP), everyday bumps and bruises can feel overwhelming.  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. 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

    38 min
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About

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.

Information

  • Creator
    ITP Australia and New Zealand
  • Years Active
    2025 - 2026
  • Episodes
    20
  • Rating
    Explicit
  • Copyright
    © 2026 ITP Australia Ltd
  • Show Website
    Beyond the Count