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High Factor VIII (8) Blood Clotting Disorder and its Impacts on life
Blood Cancers & Disorders | Last Active: Oct 26 12:56pm | Replies (141)Comment receiving replies
@ @starbabyoh Welcome to Connect…and the rare Factor Vlll Deficiency disorder club. ☺️ I’m so happy you followed this thread posted by @heidi2020 about her involvement with Factor Vlll deficiency. Knowing you’re not alone in the world with this disease can bring some validation and sense of comfort for you,
You’ve had quite an epic saga with this disease! Thank heaven’s you had an astute doctor who ran that rare blood panel to get to the bottom of your complex issues!
What treatments are you on now to prevent strokes?
Replies to "@ @starbabyoh Welcome to Connect…and the rare Factor Vlll Deficiency disorder club. ☺️ I’m so happy..."
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@loribmt well first of all, as I (and probably Heidi) always have to correct medical professionals, it is NOT Factor VIII *deficiency*... That would be no clotting and result in hemophilia, which isn't rare. We have the global opposite - hyper coagulation of Factor VIII. It would be wonderful if there was an official name for it (and believe me, I've asked my hematologist to make one up!) but no, we have to spell it out for everyone while they're saying (just like your reply) "Oh! Factor VIII deficiency disorder". It's frustrating to no end.