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Patient Stories

A total of 411 posts are filed under Patient Stories
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Father and Son Share Familial Hypercholesterolemia – One Common, One Rare
Thanks to Eagle Tribune for this piece. Jonathan Karas has high cholesterol and nearly died from it. He survived a heart attack, got… Continue Reading
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Father Calls for Liver Donor to Save 8-Year-Old’s Life. Are You a Candidate?
A father is making a desperate call for a liver donor for his 8-month-old daughter, who is fighting for her life at the National University… Continue Reading
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Kingfisher Baby Battling Rare Disease That Turns Muscle to Bone
by MARIANNE RAFFERTY. Thanks to Newschannel4 for this piece.  The first thing you notice about 1-year-old Ryder is his bright blue… Continue Reading
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Uncertainty But Relief for Family of 3-Year-Old Girl Finally Diagnosed Through Genetic Testing
BY CAITLIN KEATING @caitkeating for People Magazine. Thanks to People Magazine for this story. Kristen and Clayton Greene quickly went… Continue Reading
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Police Officer Diagnosed With Rare Guillain-Barre Syndrome Doesn’t Reschedule Wedding Day
Thanks to Abc7.com for this story. Omar and Osiris Elhosseiny’s love story began at the Pasadena Police Department when he was only a… Continue Reading
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A Cautionary Tale: What Happens When You Leave a Rare Disease Untreated
I was 7 years old and in second grade when my symptoms began. There was this chronic stabbing intestinal pain and vomiting, diarrhea, severe… Continue Reading
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My Life As a Walking Taboo: Living With Malodor Disorder
I suffer from a malodor disorder called Trimethylaminuria or TMAU. Although I’ve been aware of my disorder for fifteen years, I’ve never… Continue Reading
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