Beyond the Count

ITP Australia and New Zealand

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الصحة واللياقة
مرتان في الشهر

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.

١٣ مايو

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

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٢٩ أبريل

"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

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١٥ أبريل

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

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١١ مارس

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

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٢٥ فبراير

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

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١١ فبراير

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

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٢١ يناير

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

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١٤ يناير

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

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مشاهدة الكل (٢٣)

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.

صناع العمل

ITP Australia and New Zealand
سنوات النشاط

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Beyond the Count