Subscribe to
this category

Patient Stories

A total of 484 posts are filed under Patient Stories
Fabry Disease Through Simple Blood Test, A Lucky Catch for a Suffering Patient
Severe pain in the feet, high fevers, headaches, constipation and fatigue. These were all symptoms our son Blake started experiencing at the… Continue Reading
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

Follow us on Twitter