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Patients Immune thrombocytopenic purpura
How did you handle your immune thrombocytopenic purpura?
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sophiejane
sophiejane
Last activity on 01/10/2023 at 11:25 AM
Joined in 2022
7 comments posted | 5 in the Immune thrombocytopenic purpura Forum
1 of their responses was helpful to members
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HI, I felt relieved when I got my diagnosis, as at the beginning the doctors had no idea why my platelet count was so low. As it's a rare disease, it takes time to get diagnosed, so I can say I was pretty lucky to get diagnosed quickly enough. -+
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UniqlyMe
UniqlyMe
Last activity on 07/24/2022 at 2:49 PM
Joined in 2022
1 comment posted | 1 in the Immune thrombocytopenic purpura Forum
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Hi @sophiejane
I think what you shared is really relatable. Sometimes it's a relief to know there is a reason for why you feel the way you do aka having a diagnosis. But then again, once I learned about it, my existence became so closely tied to the disease, like "Hi its me, I have a chronic illness but I also like sports and reading, and have a family." Sometimes knowing makes it worse because it is now something that defines who you are. But I guess thats life, you know. So people are tall-others short. Some have bodies that work better than others....Anyway I just wanted to comment because its important that we find our community, share our stories with others, and be advocates for the few of us that we know.
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lynbartelt
@LizziB I have not tried Papaya leaf. The only thing in terms of diet I have found to help is to avoid alcohol and to decrease or avoid refined sugar. My platelets still drop but it seems not as much. My low platelets are due to auto-immune disease. My doctor however says there is nothing in terms of diet that helps. thanks, Lynette
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lynbartelt
@LizziB I have not tried Papaya leaf. The only thing in terms of diet I have found to help is to avoid alcohol and to decrease or avoid refined sugar. My platelets still drop but it seems not as much. My low platelets are due to auto-immune disease. My doctor however says there is nothing in terms of diet that helps. thanks, Lynette
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Courtney_J
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Courtney_J
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Last activity on 08/08/2022 at 11:09 AM
Joined in 2020
1,340 comments posted | 6 in the Immune thrombocytopenic purpura Forum
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Hi everyone,
How are you doing?
How did you feel when you were diagnosed with immune thrombocytopenic purpura? Were you given all the information you needed to understand it and its treatments? What about support?
Feel free to share your thoughts and experiences with us here!
Take care,
Courtney