ITP Support Assoc

It’s here & free to download. It’s a vital resource for anyone with any interest in ITP - The ITP Support Association - Shared decision making. #itpaware #itpawareness #global4itp #ITPStrongerTogether ⁦@rarediseaseuk⁩ ⁦@NHSEngland⁩ itpsupport.org.uk/index.php/en/h…

Don’t Put All Your Eggs in One Basket 🪺🐣 Happy Easter bank holiday to everyone in the ITP community! When it comes to managing ITP, we know it can sometimes feel like a bit of a balancing act.  Living with a chronic condition means some days the sun shines and the tide is low, and other days the waves are a bit higher. If today is a "high wave" day, don’t feel pressured to keep up with the sugar rush weekend - it’s okay to just enjoy a quiet moment instead. ✨ However you’re spending the long weekend, we hope it’s a restful one. #ITPWarrior #EasterBankHoliday #SmallWins #ChronicIllnessLife #ITPSupportAssociation #RestAndReset

"I was a fit and healthy Head of PE - I rarely took time off." 🏃‍♂️ Paul’s ITP journey started with a headache that wouldn't quit and weeks of misdiagnoses - from migraines to meningitis - before doctors discovered he had suffered a brain bleed caused by undiagnosed ITP. His story is a powerful reminder of how "arduous" the path to a diagnosis can be, especially when dealing with a rare condition that even some professionals aren't familiar with. For Paul, ITP meant a major life shift, including early retirement and navigating the distressing fatigue that often follows the condition. But four years on, he’s found a new rhythm through structure, exercise, and a lot of resilience. 📖 Read Paul’s full, incredible story of recovery here: itpsupport.org.uk/my-itp-journey… #ITPWarrior #PatientStories #ITPAwareness #InvisibleIllness #HealthJourney #ITPSupportAssociation

Speaker Spotlight: Dr Drew Provan 🔬✨ We are thrilled to have Dr Drew Provan join us for this year’s ITP Annual Patients’ Convention! As an Emeritus Reader in Autoimmune Haematology at Barts and the London, Dr Provan is a true heavyweight in the world of ITP. He co-published the international consensus guidelines used by doctors everywhere to diagnose and treat the condition, and he’s also a long-standing ITPSA Medical Advisor. Don’t Miss His Session: 🕒 11:40 AM – 12:00 PM ""Can AI help in ITP?"" Dr Provan will be diving into the cutting edge of technology to discuss how Artificial Intelligence might shape the future of diagnosis and care for ITP patients. 🎟️ Book your tickets here: bit.ly/49AlNZJ #ITPConvention2026 #ITPWarrior #MedicalInnovation #HealthTech #ITPSupportAssociation #HematologyExpert

Angela’s ITP journey started all the way back in 1997 after a trip to Northern India. What followed was a decade-long "on-again, off-again" relationship with her platelet counts - moving through steroids, remissions, and relapses that seemed to come out of nowhere. Her story is such a great reminder that ITP is rarely a straight path. It took years, several different treatments, and eventually a big decision to have a splenectomy before she found the stability she was looking for. Fast forward to today, at 77 years old, Angela is celebrating ten years of stable counts! 🎉 It’s a lovely, grounded look at the long game of living with ITP and the importance of finding what works for your own body. 📖 Read Angela’s full story here: itpsupport.org.uk/angela-smith-a… #ITPWarrior #PatientStories #ITPJourney

Registration is open for our ITP Annual Patients’ Convention on Saturday, 27th June 2026. We’re heading to the Royal College of Pathologists in London for a day that’s all about getting the community together. If you’ve been looking for a chance to chat with others who actually "get it," or you just want to get up to speed on the latest research and treatment info, this is the place to be. 🔗 Grab your tickets here: bit.ly/49AlNZJ #ITPConvention2026 #ITPWarrior #PatientSupport #LondonEvents #ITPSupportAssociation

Registration is open for the ITP Patient Convention 2026! Join leading ITP experts and connect with others who understand life with ITP. 📅 27 June 2026 📍 London 🎟️ Member & HCP discounts Book now: ow.ly/SzXU50YkR5t #ITPConvention2026 #ITPCommunity #RareDiseaseUK #cpd

If you’ve been diagnosed with ITP in the UK or Ireland, chances are Prednisolone or Dexamethasone was the first name you heard. They are the "first responders" of the ITP world - designed to jump in and stop the immune system from attacking your platelets. But as many in our community know, steroids can be a bit of a double-edged sword. While they are great at getting those platelet numbers up quickly, the side effects can be a lot to handle. Have you been on a course of steroids? What’s the one thing you wish someone had told you before you started? Share your tips below! 👇 #ITPTreatment #Steroids #ITPWarrior #UKHealth #PatientEmpowerment #ITPSupportAssociation #InvisibleIllness

Happy First Day of Spring! 🌷☀️ There’s nothing like the first bit of spring sun to make everything feel a little brighter. While living with ITP can sometimes feel like a long winter, the change in seasons is a great reminder to reset. Whether it’s a short walk or just enjoying the extra daylight from a window, we hope you find a small win today. What are you most looking forward to this season? Let us know below! 👇 #FirstDayOfSpring #ITPWarrior #SpringVibes #SmallWins #ITPSupportAssociation

Whether it's a tip for managing fatigue, a question to ask your consultant, or just a reminder that it gets easier - drop your knowledge in the comments below. You never know who might need to hear it today. 👇💜 #ITPCommunity #NewDiagnosis #ITPWarrior #ChronicIllnessSupport #PatientAdvice #ITPSupportAssociation

Ever feel like you’re just… drifting? 🌌 For a lot of us with ITP, fatigue isn't just "feeling a bit knackered." It’s that deep, bone-tired exhaustion that makes you feel totally disconnected from everything around you. One minute you’re fine, and the next, it feels like your internal battery has just bottomed out, leaving you stuck in a bit of a "nebula" while the rest of the world carries on at 100mph. When you feel like you've lost signal with Mission Control, how do you ground yourself? 🌍✨ Drop a 🚀 in the comments if you’re stuck in the fog today, or tell us your go-to way to recharge! 👇 #ITPFatigue #SpacedOut #BrainFog #ITPWarrior #ChronicIllness #SymptomManagement #ITPSupportAssociation

"Life does not stop to wait for you, and the world continues to turn."🌍 When Rhona was diagnosed with ITP at just 16 years old, her world felt like it was "tail-spinning into darkness" while everyone else’s kept moving. In our latest blog, Rhona shares a raw and honest reflection on the first 18 months of her journey - from the "eerie" feeling of hospital stays to the complex cycle of anger, grief, and ultimately, finding the hope needed to keep going. It’s a powerful read for anyone who has struggled with the "Why me?" of a chronic condition or the frustration of a "chronic" diagnosis. 📖 Read Rhona’s full story here: itpsupport.org.uk/life-with-itp-… #ITPWarrior #PatientStories #ChronicIllnessLife #ITPSupport #MentalHealthMatters #LifeWithITP

Do You Know Your Blood Cell Superpowers? 🧠⚡ Every cell in our body has a vital mission to keep us healthy. Meet the team lead by Captain Platelet!  In our new Activity Pack, kids can learn exactly what these "HemoHeroes" do: 🔴 Red Cell Racer: Delivering oxygen to keep us moving!  ⚪ White Knight: The brave defender fighting off germs!  ✨ Plasma Pulse: The transport system for all our nutrients!  🛡️ Captain Platelet: The master of healing and clotting!  Did you know? Platelets help stop bleeding by forming clots—real-life body shields!  Download the full Match & Learn game via the link in our bio to see if your little ones can pair the heroes with their powers.  #STEMForKids #CaptainPlatelet #BloodHealth #ITPAwareness #LearnThroughPlay #HemoHeroes

Join us in London for the 2026 ITP Patient Convention! Registration is open for our flagship annual event at the Royal College of Pathologists on Saturday, 27th June. This is a unique opportunity for the UK and Ireland ITP community to come together. Whether you are a patient, a caregiver, or a healthcare professional, this day is designed to move beyond the numbers and focus on the latest in ITP care and research. What’s happening on the day: Expert Insights: Hear from a number of the world's foremost ITP specialists. Connection: Network with others who understand the journey and share practical advice. Professional Development: Healthcare professionals can earn 6 CPD credits. Refreshments and lunch are included, with special ticket rates available for Association members and healthcare staff. 🔗 Secure your spot today: bit.ly/49AlNZJ #ITPConvention2026 #ITPWarrior #Hematology #PatientSupport #ITPSupportAssociation #LondonEvents

International Women’s Day is a reminder that managing ITP is about more than just a blood test. From the complexities of pregnancy to the monthly impact of heavy periods, navigating this condition requires a practical, informed approach to care. Your day-to-day quality of life matters as much as your platelet count. By speaking up about invisible symptoms and sharing our experiences, we ensure better advocacy and outcomes for everyone in the community. Happy International Women’s Day to all the women in our ITP network. #IWD2026 #WomensHealth #ITPWarrior #InternationalWomensDay #ITPSupportAssociation

Happy World Book Day! 📚✨ Today, we’re celebrating a very special addition to our library: The ITP & Me Teen Book. Navigating your teenage years is a journey in itself, but doing so with a chronic condition like ITP adds a unique set of challenges. Whether it’s explaining why you’re bone-tired to friends or managing the rollercoaster of treatments, having the right information is your greatest superpower. Why this book is a must-read for our younger warriors: Clear & Relatable: It breaks down the complexities of Immune Thrombocytopenia in a way that actually makes sense for young people. Understanding Treatment: From steroids to long-term options, it helps teens navigate their medical journey with confidence. Self-Advocacy: It empowers young adults to find their voice and advocate for their own health and quality of life. 📖 Find out more and get your copy here: itpsupport.org.uk/itp-and-me-an-… #WorldBookDay #ITPAndMe #TeenHealth #ITPWarrior #PatientEmpowerment #ChronicIllnessCommunity #ITPSupportAssociation

Speaker Spotlight: Professor Nichola Cooper 🌟 We are honoured to have Professor Nichola Cooper joining us for the ITP Annual Patients’ Convention! As a leading haematologist and a dedicated ITPSA Trustee and Medical Advisor, Nikki Cooper brings a wealth of international expertise to our community. From her training at Cambridge and Barts to her international research in London and New York, she has remained at the forefront of ITP care and research. Don’t Miss Her Sessions: 🕒 1:55 PM – 2:20 PM Join Professor Cooper as she presents insights from her I-WISh study regarding Health-Related Quality of Life. This talk is essential for anyone looking to understand the broader impact of ITP beyond just the numbers. 👥 Breakout Session: Women & Children Prof. Cooper will also be joining Cindy Neunert and John Grainger for a dedicated breakout session focusing on the unique challenges faced by women and children living with ITP. 🎟️ Register your spot now: bit.ly/49AlNZJ #ITPConvention2026 #ITPWarrior #PatientEmpowerment #Hematology #NicholaCooper #QualityOfLife #ITPSupportAssociation

One of the most frustrating parts of living with ITP is the assumption that if you don't "look" bruised, you must be "fine." As our community knows all too well, the skin’s surface is only part of the story. You can have dangerously low platelet counts (single digits!) without a single mark on your body. Conversely, you might be covered in bruises even when your counts are stable and rising. Why this Myth is Dangerous: False Security: Patients might delay a blood test because they don't see physical signs, even if they feel "bone-tired" or "off". Dismissed Symptoms: Internal symptoms - like heavy menstrual bleeding, gum bleeds, or crushing fatigue - are just as critical as a visible bruise. The Invisible Burden: It can make it harder for friends, family, and employers to understand why you might be struggling when you "look perfectly healthy". ITP is unpredictable. Symptoms don't always match the surface. This is why regular monitoring and listening to your body - not just your skin - is so important. How do you explain the "invisible" side of ITP to people who only look for bruises? Share your tips in the comments! 👇 #ITPMyths #InvisibleIllness #ITPWarrior #PlateletCount #ChronicIllnessAwareness #ITPSupportAssociation #MoreThanBruises

Heavy menstrual bleeding is one of the more common - and often most overlooked - symptoms of ITP. For many women and girls, it is the very first sign that their platelet counts have dropped, yet it is frequently dismissed or normalised. Why does ITP affect your period? Platelets are your body’s "first responders" to bleeding. They stick together to form a plug at the site of a broken blood vessel. When your platelet count is low, your body cannot effectively manage the natural shedding of the uterine lining, leading to cycles that are heavier, longer, or more difficult to manage. What should you look out for? It is important to know when a period moves from "heavy" to "concerning."  Keep an eye out for: The 1-2 Hour Rule: Needing to change your pad or tampon every 1–2 hours. Extended Duration: Bleeding that lasts longer than 7 days. The Impact of Fatigue: Feeling "bone-tired" or breathless, which can be a sign of ITP-related anemia. Don’t be a "lone fighter." If your periods are impacting your quality of life, it is vital to speak up. Your menstrual health is a key indicator of your ITP management. Documenting your cycle can provide your hematology team with the information they need to adjust your treatment and ensure you are supported. #ITPAwareness #HeavyPeriods #ITPWarrior #WomensHealth #BloodHealth #MenstrualHygiene #ITPSupportAssociation #PatientEmpowerment

🎤 Speaker Spotlight: Professor Adrian Newland CBE 🎤 We are honored to introduce a true pioneer in the world of haematology and a cornerstone of our community: Professor Adrian Newland. As the Chair of Trustees for the ITP Support Association, Professor Newland has been with us since the very beginning. In the mid-90s, he supported our founder, Shirley Watson MBE, in establishing the association, and he has remained a tireless advocate for involving patients directly in their own care. Why you can’t miss his sessions: Professor Newland is the Professor of Haematology at Barts Health NHS Trust and a former President of the Royal College of Pathologists. He brings decades of expertise as a leading expert in immune thrombocytopenia. At the 2026 Convention, Professor Newland will be sharing his wealth of knowledge through: Opening Remarks: Setting the stage for a day of discovery and community. Expert Q&A Panel: Chaired by Professor Newland, this is your chance to hear the world's top ITP experts answer your burning questions in real-time. Whether you are newly diagnosed or have lived with ITP for years, Professor Newland’s insights into research and patient welfare are not to be missed! 📍 Location: The Royal College of Pathologists, London 📅 Date: June 27th, 2026 🔗 Secure your spot: bit.ly/49AlNZJ #ITPSA2026 #ITPSupport #AdrianNewland #Haematology #PatientCare #ITPAwareness #LondonEvents

🩸 Has the ITP Support Association helped you? Whether you’ve downloaded our Patient Information Booklets, joined us at a Patient Convention, or simply found comfort in our community, we would love to hear from you.  Sharing your experience doesn't just help us - it helps others across the UK and Ireland discover a lifeline. Your words give newly diagnosed patients the confidence to reach out and realise they don’t have to face ITP alone. #ITPSupport #ITPCommunity #UKHealth #RareDiseaseUK #PatientVoice #ITPWarrior #StrongerTogether