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Patient Stories

A total of 247 posts are filed under Patient Stories
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Dyslexia Precedes Neimaan-Pick Type C in Idaho Teen
An Idaho teenager is bravely fighting an extremely rare disease, often referred to as “Childhood Alzheimer’s.” Kristen Wells, 17, was… Continue Reading
“They Told Me To Go Home and Get My Affairs In Order,” Says Pulmonary Hypertension Patient
Submitted by Susie Alvarez On June 30, 1992, on my drive home from work, I had a crushing pain in my chest as though someone was sitting on… Continue Reading
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Painful Tumors Reveal Decrum’s Disease for Arizona Woman
A local woman grappled with a painful disease for several years before doctors could pinpoint a diagnosis. Tambra Momi currently lives in… Continue Reading
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She Knew Something Was Wrong from the Beginning: Newborn With Genetic Liver Disease
From the beginning, Christina Whitehead knew something was wrong. Her newborn son, Nathan, who arrived March 2, was born with jaundice.… Continue Reading
Teen Allergic to ALL Food: How Mast Cell Activation Disorder Attacks
When many of us think of our favorite memories growing up, our minds wander to colorful birthdays, festive holidays, and family dinners. But… Continue Reading
Rare Blood Disorder Startles Family, “He Looked Like Someone Stabbed Him to Death”
Christmas morning is supposed to be about smiles, laughter and good cheer. For one Gainesville family in 2011, it was complete horror and… Continue Reading
How a Radio Personality Became a Rare Disease Advocate
Scot Langley, better known as Froggy to listeners of the syndicate radio show Elvis Duran and the Morning Show, learned in 2010 he had… Continue Reading