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Patient Stories

A total of 394 posts are filed under Patient Stories
Clinical Trial Gave Me Quality of Life: A Continued Fight for the DMD Community
I was first diagnosed with Duchenne Muscular Dystrophy (DMD) at four years old. At this age I had no idea what having Duchenne actually… Continue Reading
Neurosarcoidosis and Systemic Sarcoidosis: What Wore Me Down Most
I was diagnosed with Neurosarcoidosis in 2001 and over the years biopsies confirmed Systemic Sarcoidosis in most of my major organs. I do… Continue Reading
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Here Goes Hannah! Girl Heads to NIH For Treatment of Giant Axonal Neuropathy
12-year-old from Clifton Park heading to National Institute of Health for potential life-saving treatment Hannah Sames, 12, embarks on the… Continue Reading
Wish Granted: It’s Disney for 3-Year-Old Hemophagocytic Lymphohistiocytosis Patient
A young girl from Nashua is on her way to Disney World thanks to the Make-A-Wish Foundation. Three-year-old Sophia Jarest has been battling… Continue Reading
Hereditary Tyrosinaemia Drug Becomes Affordable in Australia Thanks to Drug Program
by Rebecca Sullivan (Source) Six weeks after the birth of their daughter Jeanette in 2001, Melbourne couple… Continue Reading
The Best and Worst News of My Life: Getting a Diagnosis After 30 Years
My whole life, I thought I was the biggest wimp alive. Until one day, when I was commiserating with my sister about how we have more aches… Continue Reading
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Winning Math Student Has Fast Transition into Paralyzing Illness
My son was already one of a kind: he loved math—and he was great at it too. It was early January when he and his team started to… Continue Reading