Tsmeuoath
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Tsmeuoath1 karma
It's a amino acid processing disorder. Basically, my cells don't process cystine correctly--if I don't take my meds every six hours and Eyedrops every waking hour, I get cell damage. The eyedrops were finally approved by the FDA (after a 14 year study where you had to go to the NIH to get the Eyedrops).
I'm doing well, considering I had two strokes in February - April. Still have some word finding difficulty, and I tend to get angry more easily than before I had my strokes.
My fiancée has it too--we met through a support group. Only about 2,000 people in the world have it.
Tsmeuoath1 karma
Do people confuse your condition with min, Cystinosis? They always confuse Cystinosis with Cystic Fibrosis.
Tsmeuoath28 karma
I've had 3 strokes and I'm 30 years old. How do you do cope with the aspashia and memory problems?
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