Patient Stories

I Gave My Stem Cells To Save a Life From Cancer And Now I Have Contracted a Deadly Disease With No Cure


My name is Hannah Heinzig, and I am 24 years old recently diagnosed with Pemphigus Vulgaris. This is how everyone starts out there story, so I will get those needed details out of the way. Now let me back track a few years. I went […]

Celiac to Refractory


On January 29th, 2009, I was hit head on by a drunk driver who was driving on the wrong side of the road. Within three months I became gravely ill. I was unable to eat any food and resorted to living on Ensure. Finally, after […]

One Rare Disease Leads to Discovery of Another in Alexandra


Alexandra Mae Edges was born with Heterotaxy Syndrome and complex congenital heart defects. Heterotaxy Syndrome only occurs four our of every million births. At five days old she had her first open heart surgery. Since then she has endured four other heart surgeries and one […]

Bangalore PhD Student on Coming Out with Thalassemia


My name is Namitha from Bangalore. I want to share my story to empower and enable others to come out as well. I am now a PhD student working on disability and psychology at the National Institute of Advanced Studies, Bangalore. I have come very […]

“Have Hope,” says Bahcet’s Patient, “I Walked in Your Shoes.”


October of 1998, in an East Coast Gas station, begins my long journey on the road to healing. I felt the first of hundreds of painful ulcers. At the time I had flu-like symptoms on and off for weeks, pain in my joints, pain all […]

Rocking and Rolling and Loving Life


Peg’s symptoms first began about three years ago when she was 49 years old. This is a little later than the usual onset of symptoms, being early to mid forties. She first noticed memory issues that were not really too bothersome but did make for […]

Woman Suffering from Rare Disease, Sheds ‘Blood Tears’

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 A 22-year-old woman here is suffering from a rare disease which leads to shedding of “blood tears” from the eyes instead of saline water.Doctors at a government hospital here said Lakshaya Bais has been traced out as the third patient suffering from the rarest of […]