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Patient Stories

A total of 468 posts are filed under Patient Stories
Boy Battling Spinal Muscular Atrophy Takes First Steps
BY MARNI HUGHES (source)   From the moment Isaiah Kobernik was born, the odds were stacked against him.   Isaiah was born with a rare… Continue Reading
Life with Collapsible Lungs: It’s Been A Dicey Two Decades
by Dann Furia – 12/12/16 Read more about Dann here. At age 15, shortly following an afternoon swim team practice, I felt a remarkably… Continue Reading
Rare Revolution: My ULTRA-RARE Story
Richard Gelati has lived with an ultra-rare condition for nearly forty years. His story demonstrates that with perseverance, a strong family… Continue Reading
Rare Revolution: Bohring-Opitz Syndrome Bringing Families Together
The Bohring-Opitz Syndrome Foundation tells us about this ultra-rare condition which affects less than 70 patients worldwide, and how their… Continue Reading
The “Late Bloomer” Who Never Bloomed
I had a fairly uneventful childhood. I was late in starting to talk and walk when very young, but by the time I got to school I was like any… Continue Reading
Massachusetts Family Faces Rare Form of Hereditary Spastic Paraplegia in 3-year-old Daughter
SOURCE Like most 3-year-olds, Robbie Edwards loves action. But Robbie faces more challenges than most her age. Last summer, an MRI revealed… Continue Reading
The Letter I Would Write to Myself Before the Diagnosis
Dear Ellie of 2014, On June 18th, 2014, you will get your first Multiple Sclerosis diagnosis.  The type of MS you have will be changed a… Continue Reading
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