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Patient Stories

A total of 96 posts are filed under Patient Stories
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The Face of Bartter Syndrome: Ethan’s Cure
Imagine knowing something is wrong with your baby, but medical professionals cannot provide a diagnosis. Frustrated and scared, you spend… Continue Reading
Family Needs Help Relocating Sons with Pompe For Medical Care
My name is Jenni, I live in Adrian, Missouri (60 miles south of Kansas City Missouri) - and I need your help. Our sons Gavin (22 months… Continue Reading
A Twist of Fate – Arterial Tortuosity Syndrome
Aiden was two when he had two separate hospital stays about six weeks apart for a pneumonia type illness. It wasn’t until the second… Continue Reading
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New Mom Develops Guillan-Barre Syndrome After Difficult Labor
When Heather Hodsdon walked into Belmont Wheelworks in April 2010 to get her bicycle fixed, manager Gary Wood couldn’t help but laugh.… Continue Reading
Lisa with Adrenal Cortex Carcinoma, “I Had to Fight for My Treatment Plan.”
I was 35 years old when I was diagnosed with Adrenal Cortex Carcinoma–stage IV, metastasized to the lungs. I was recently divorced, a… Continue Reading
Kickin’ Fightin’ and Strong: Klippel-Feil Syndrome and Me
I was diagnosed with Klippel-Feil Syndrome (KFS) shortly before my first birthday. At birth I had the ‘classic’ triad of… Continue Reading
Kallmann Syndrome Causes Absent Puberty
Kallmann syndrome is a rare genetic hormonal condition. Its primary symptom is a failure to start or fully complete puberty, it is also… Continue Reading

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