Rare Disease Day 2023 and TTP

Today is Rare Disease Day, highlighting the need for research and aiding speedy, accurate, diagnosis to save lives.

I had thought to share my journey through diagnosis and treatment but I don’t think that’s needed, others have told their stories on blogs and websites. It’s enough to say it was harrowing, treatment was long and at times I felt like a lab rat with comments made by blood donation managers about how much plasma was being given. I was scared they would stop treatment. I was scared I would die. But I survived, thanks to an amazing TTP Team of haematologists and plasma exchange nurses.

So far my blood has slipped 4 times, two interventions with Retuximab and one full relapse with 3 weeks on intensive care. Many TTP patients come close to death and it is considered a medical emergency.

So it’s important to fight. Not just for myself and fellow TTP patients but for those who will follow us. Long live the TTP patients!

https://youtu.be/j2-E_NDj2dQ

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Porridge for Breakfast, The Ordinary Life of a TTP Survivor

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