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!

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https://youtu.be/j2-E_NDj2dQ