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Patient Stories

A total of 483 posts are filed under Patient Stories
Ezra’s Story
Our second son Ezra was born on April 20, 2013. He has a longer medical history than many of us will have our entire lives. He was… Continue Reading
Lulu On Track: How An Early Marfan Diagnosis Made All The Difference
Three kids and a dog will move you out of the city pretty quickly,” admits Bryan Butvick who moved with his wife Sara and their three… Continue Reading
The “Weirdest” Migraine of My Life: Pseudotumor Ceribri
by K. Louise Zollinger A couple weeks before Christmas of 2012, I felt a “weird migraine” coming on that was weirder than anything I had… Continue Reading
Emi Undiagnosed: Can You Help?
Emi was born on 7/17/13 with her intestines in her umbilical cord. We were told it was omphalocele, I was a patient at a high risk clinic… Continue Reading
Sleeping Beauty: When Hypersomnolence and Narcolepsy Take Over
My symptoms started in high school. However, I feel like I showed emotional and behavioral symptoms before my more serious symptoms began. I… Continue Reading
When FAVA Isn’t Just a Bean: Living with a Fibro Adipose Vascular Anomaly
By: Dana Wolinsky When my son was four years old, he was given his first soccer jersey, specifically, a red Manchester United jersey bearing… Continue Reading
Finding Strength with Factor 5 Hemophilia
by Nabila Husseni I am a severe Factor 5 Hemophiliac living in Ahmedabad, Gujarat, India. My name is Nabila Husseni I’m a 30-year-old… Continue Reading

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