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Patient Stories

A total of 411 posts are filed under Patient Stories
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 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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