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familial (inherited) thrombocytopenia

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13 years 2 months ago #30673 by sak50
familial (inherited) thrombocytopenia was created by sak50
I have extremely low platelets (9,000 -32,000). Familial ( inherited ) thrombocytopenia. My mother, brother, and daughter do also. I have tried all the treatments available , none have helped! I will not have my spleen removed. Has anyone found help with holistic or functional medicine, I would love to hear from you!! Thanks

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 2 months ago #30682 by Sandi
Replied by Sandi on topic familial (inherited) thrombocytopenia
Did you and your family get a diagnosis? Which type of inherited thrombocytopenia do you have?

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13 years 2 months ago #30717 by whatthehwegoingtodowiththiss
Replied by whatthehwegoingtodowiththiss on topic familial (inherited) thrombocytopenia
Did you speak with a geneticist? There are many types and some do not have a treatment that actually works. If it is a genetic mutation then removing your spleen wont work. I spoke with one a few weeks ago about the possibility of having myh9 mutation. He also said most people that get ITP past childhood do not truly "ITP" but either a side effect of something (like Lupus, chemo, etc.) or it is genetic. I dont know if I believe this necessarily, but you should definitely meet with one before deciding.

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Platelet Disorder Support Association

Platelet Disorder Support Association
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IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.