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Patient Stories

A total of 394 posts are filed under Patient Stories
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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
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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
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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
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Hereditary Tyrosinaemia Drug Becomes Affordable in Australia Thanks to Drug Program
by Rebecca Sullivan  news.com.au@beck_sullivan (Source) Six weeks after the birth of their daughter Jeanette in 2001, Melbourne couple… Continue Reading
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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