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Patient Stories

A total of 540 posts are filed under Patient Stories
First Duchenne Muscular Dystrophy Boy in Canada to Begin Drisapersen Redosing
Five years ago, 12-year-old Alex Chiabai was one of the first boy in Canada to begin taking drisapersen, a promising drug that provided a… Continue Reading
Australian Man Experiences Rare Instance of Guillain-Barré Syndrome (GBS)
Thanks to 9News.com.au for this piece. A Sydney man who was paralysed by a rare autoimmune disease while holidaying in New Zealand last… Continue Reading
Brother and Sister Receive Rare Cystinosis Diagnosis
Joel Strickland is a rare boy, not only because he is a diminutive, 12-year-old, guitar-playing, cowboy-hat-wearing, dirt-bike-riding… Continue Reading
British Woman Diagnosed with Ischemic Oesophagus, First Mistaken as a Heart Attack
A widow has become the first Briton ever to be diagnosed with an ultra-rare disease after she regurgitated seven pints of vomit that looked… Continue Reading
Baby with Dextro-Transposition Finds Life-Long Success After Surgery
by  Natalie McGee-Lester I was born with dextro-transposition of the great arteries in Houston, Texas in 1975. During that time, d-TGA and… Continue Reading
So Much More Than a Migraine: Idiopathic Intracranial Hypertension
by Amanda Ames Everyone in my family wears glasses. I remember being in first grade and struggling to see the chalkboard and being taken to… Continue Reading
My Wife Had Ehlers Danlos Syndrome and She Never Knew
My wife died in 2008. It was the same year my daughter was diagnosed with Ehlers Danlos Syndrome (EDS). We have dedicated a new program in… Continue Reading
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