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What is the name of the FB group? My 23 yr old son has systemic Mastocytosis.
https://connect.mayoclinic.org/comment/1069496/
My 23 yr old son has systemic Mastocytosis
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Any with MM also have active Mastocytosis? Bone marrow show both.
Any with MM also have active Mastocytosis
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Your doctor has pretty much ruled out PV, even with the bone marrow biopsy. Hydroxyurea (HU)...
Ayvakit your doctor recommended for the mastocytosis ... article link I gave you from Mayo for mastocytosis ... the signs and symptoms of systemic mastocytosis ... validity for your doctor to suspect mastocytosis ... enlarged spleen are side effects of the mastocytosis
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I was also told that Mayo Rochester sees Mastocytosis but not for MCAS, even with meeting...
also told that Mayo Rochester sees Mastocytosis
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@aussiefrankie I've was diagnosed with Systemic Mastocytosis 3 months ago...I'm on AYVAKIT...I AGREE WITH YOU... THIS...
#39;ve was diagnosed with Systemic Mastocytosis
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