Patient Stories

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

Hope

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

Iphone-download-8262013-564

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’

Screen Shot 2014-08-06 at 12.04.32 PM

 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 […]

9-Year-Old with Brain Iron Accumulation Requests Birthday Cards

254615_800x450

Meet Ali Najera. Ali is a 9-year-old girl who loves Disney princesses, seashells, and making new friends. But Ali is also suffering from a condition known as Neurodegeneration with Brain Iron Accumulation (NBIA). This rare, debilitating condition reduces much of her physical capabilities, and Ali […]

Proteus Syndrome No Match for Savannahian Patient

Screen Shot 2014-08-11 at 9.53.40 AM

Seriously, sometimes he says his face hurts from smiling so much. According to Savannahian Daniel DeLoach, 27, “there are always people out there in much worse situations.” Here’s his: 105 surgeries — so far — including two spinal cord surgeries, three body casts, two near-death […]

Child with MLD Given New Hope by MLD Foundation, Angel View and Riverside County Housing Authority

Screen Shot 2014-08-11 at 9.26.31 AM

What a remarkable turnaround for Reyna Melgar and her 3-year-old son, Josué Candelario, who suffers from MLD, a rare degenerative neurological disease. A few months ago, she was in a dilapidated, fly-infested trailer with limited medical supplies and little help. Today, thanks to nonprofit groups […]

Boy with Recessive Dystrophic Epidermolysis Bullosa Gets Wish Come True

Screen Shot 2014-08-06 at 11.55.55 AM

Garrett Spaulding couldn’t hide his smile Friday morning. The moment he’d been planning for years was finally here. Spaulding, a 17-year-old boy from Gustine, was born with recessive dystrophic epidermolysis bullosa, or EB, a rare disease that causes blisters and tears on the skin, creating painful wounds. […]