February 2020

"I just found 6 months ago that I have Neuroferritinopathy (an adult onset NBIA disease). All the symptoms were there about -5 years ago, I guess. For years I've had bad chorea of upper body and neck and worsening all the time for years speech and swallowing problems too. ( I have EDS another DNA defect so that's two of them which is so rare I can't believe) and four auto immunes. My walking is getting near impossible, very close to a mobility aid. I am virtually bed ridden and the isolation, distorted communication and aloneness of this is very daunting. I try to keep spirits high."


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