Patient Stories

“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 […]

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


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

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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

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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

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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. […]