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What is your journey with thrombotic thrombocytopenic purpura (TTP)?

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What is your journey with thrombotic thrombocytopenic purpura (TTP)?

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LizziB

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17/08/2022 at 16:20

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LizziB

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Last activity on 02/04/2024 at 00:46

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280 comments posted | 5 in the Thrombotic thrombocytopenic purpura Forum

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Hi there,

Welcome to the "Living with Thrombotic Thrombocytopenic Purpura (TTP)" forum on Carenity! This space is dedicated for you to share your questions, stories, fears, advice, and whatever else is on your mind with other members.

As you know, being diagnosed with a chronic disease, especially a rare one, is a life-changing experience. So, let's talk about it together!

What was your diagnosis experience like? How long did it take you to receive a diagnosis? What were the signs or symptoms that made you feel like something was wrong? How are you doing now ?

Feel free to share your story here!

Take care,

Lizzi from the Carenity team

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TWWTS1

28/10/2022 at 00:49

TWWTS1

Last activity on 11/01/2023 at 01:31

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11 comments posted | 4 in the Thrombotic thrombocytopenic purpura Forum

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The whole experience, as probably for everyone, was shocking and a bit scary. One day you're living and the next you have all the worry of possible stroke, brain damage, coma, really intense worst case scenarios. I guess TTP is not pretty, but part of life? I was diagnosed during/after covid (I'm not sure how we count that any more) but that whole time period really put some of my life things into perspective.

What is your journey with thrombotic thrombocytopenic purpura (TTP)? https://www.carenity.co.uk/forum/thrombotic-thrombocytopenic-purpura/living-with-thrombotic-thrombocytopenic-purpura-ttp/what-is-your-journey-with-thrombotic-thrombocytopenic-purpura-ttp-4757 2022-10-28 00:49:25

ChimeyBlack

25/11/2022 at 17:13

ChimeyBlack

Last activity on 19/08/2024 at 12:15

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4 comments posted | 1 in the Thrombotic thrombocytopenic purpura Forum

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I'm new to this site but want to share both my relief and despair. I was getting headaches and bleeding gums. My doctors told me it was probably leukemia. I had to under go blood and bone tests- luckily, not leukemia, but TTP. Glad i don't have cancer, but a rare disease is also challenging.

Thanks for listening

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