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Patient Stories

A total of 457 posts are filed under Patient Stories
Alex-Daddy
You May Be The One To Save Alex’s Life
Alex lives in St. Louis, Missouri with his dad, Brandon. Have you ever heard of IPEX Syndrome? Neither had we, until after a two year search… Continue Reading
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When Meningitis Strikes Twice
by Heather Freeman My Mollarets Meningitis journey started in August 2007. I was feeling terrible, laid up in bed with what I thought was a… Continue Reading
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Woman Diagnosed with Primary Biliary Colangitis Hopes to Educate Others
In her mid-thirties and in good health, Brandi Bartel didn’t know what to think when she started experiencing strange symptoms. “I… Continue Reading
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Low Immunoglobulin, High Alpha Protein—Could it be Ataxia Telangiectasia?
by Annie Pienaar Anle was born at full term. Her weight was 2,7 and 49 cm. She accomplished all her milestones at the right time–sitting,… Continue Reading
Carolann Elmore's son Nikko died at age 2 in 2003 of Pompe disease, and shares a photo of her son just short of his third birthday at her home in Concord, Calif., on Monday, Nov. 14, 2016. Because Nikko was not able to speak towards the end of his life, in the photo Nikko signs the word more as he communicates to his parents to continue dancing and kissing as he watches from his rocking chair. Pompe disease is rare and those afflicted with it don't have an enzyme that allows them to process glycogen. Protein builds up in their muscles, heart and liver, causing them to stop working. (Susan Tripp Pollard/Bay Area News Group)
In Son’s Memory, Mom Pushes For Awareness for Pompe
(SOURCE) Photos of Grante Robert Nikolaus “Nikko” Elmore and Bryson Hankins reveal similar boyish good looks — tousled, dark-haired… Continue Reading
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Woman With Rare Condition Has Period For Five Years
A woman was diagnosed with a rare blood disorder that caused her to have her period for five years straight. Chloe Christos, 27, first got… Continue Reading
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World Upturned When Nurse Epidemiologist Comes Down with Reoccurring Meningitis
by Cynthia McCoy Mollaret’s Meningitis began for me in 1993 at about 4:00 AM. I awoke with an incredible headache, stiff neck and being a… Continue Reading