My brother Andrew, 12, was diagnosed with Cystinosis in 2005 when he was one years old. my family is from Calgary, Alberta, Canada.
I am involved with the Cystinosis Research Foundation community (USA), C.A.R.E. - Cystinosis Awareness Research...
Kim is my doughter...she's 10 and she was diagnostic when was 10 months old.... we Live in a small village between the Alps, near the boundaries of Austria and Slovenia.
She is a very strong girl, she is a fighter..... She is not very tall and...
4 people with Cystinosis have taken the SF36 survey. Mean of Cystinosis is 1975 points (55 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey
