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Patient Stories

A total of 536 posts are filed under Patient Stories
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
Kyle Bryant Continues Athletic Pursuits Long After Diagnosis of Friedreich’s Ataxia
SOURCE — Kyle Bryant was a kid who wanted the ball. He wanted in on the game and always wanted a chance to help his team win. Growing up… Continue Reading
Living with LEMS
By Dr. Anne Murray I was diagnosed with LEMS or Lambert Eaton Myasthenic Syndrome in May 2011. I started to have symptoms after I developed… Continue Reading
Hayley Fights Niemann Pick Type C Using Compassionate Use Program and Cyclodextrin
Hayley was diagnosed with Niemann Pick Type C (NPC) in October of 2011. However, she had been living with the symptoms since she was six-… Continue Reading
Black Sabbath Guitarist Inspires Goldenhar Syndrome Patient and Advocate Not to Let Disabilities Stand in Path of Happiness
Peter Dankelson is a previous honoree of our Global Genes RARE Patient Advocacy Awards and he’s continuing to reach out on behalf of rare… Continue Reading

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