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Patients Thrombotic thrombocytopenic purpura
Getting your thrombotic thrombocytopenic purpura (TTP) diagnosis: Share your story!
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TWWTS1
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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Hi
When I was diagnosed, I had never heard of the disease. I was about 42 at the time, and I don't think my doctor did a good job explaining it. I had to do a lot of googling, many times over, to start to understand what each part meant. I don't know much about biology, and TTP sounded complicated. These googled articles helped more than the doctors in my opinion. But I looked it up on my own time, so I had time to digest the information and not be rushed out because it was the end of my appointment.
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LizziB
Community managerGood advisor
LizziB
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Last activity on 02/04/2024 at 00:46
Joined in 2022
280 comments posted | 5 in the Thrombotic thrombocytopenic purpura Forum
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Hello all,
How are you today ?
How did you feel when you were told of your diagnosis? What kind of information were you given by the doctors? Was it enough to fully understand the disease and its treatments? Did you have to do outside research? What resources did you use?
Feel free to share and discuss in the comments section below!
Have a great day,
Lizzi from the Carenity team