Story about Leukodystrophy .

Late onset Krabbe

Jul 23, 2016


Diagnosed in 1999 after 20yrs of misdiagnosis. My 2 cousins died of the infantile form of Krabbe about 10 years before I was born, at a time when these things were not talked about(British Stiff Upper Lip Syndrom). I had a stem cell transplant in 2000 and am now 40yrs old.

I also have a sister that has late onset Krabbe who didn't show symptoms until her late teenage years, she has not been transplanted but her issues are not that severe at present.

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