11 year-old girl suffering from Erythropoietic Porphyria or EPP

Savannah Fulkerson, suffering from Erythropoietic Porphyry or EPP

One California girl exposure to the Sun could be fatal, 11 year-old Savannah Fulkerson is allergic to the Sun, Savannah explains "It's just like pain, it feels like a lava is being poured on you, it really hurts."  At age 4 blisters and sores began appearing on her hands and arms, and the doctors diagnosed the rash like symptoms as eczema, but Savannah's mother believed it was more serious, Savannah says "Her mother would say to the doctors it's like she's allergic to the Sun and they would say, no one is allergic to the Sun."

And her mother is right at the age of 9 she was finally diagnosed with Erythropoietic Porphyry or EPP, which is a defect in hemoglobin production, which make Savannah feel like she's being burned alive when exposed to the Sun, Savanah's mother, Andrea Fulkerson says "All of the sudden she starts screaming and I'll get a towel soaked it on the water in the bathroom and come back out and drenching it on her."

To avoid these symptoms Savannah wears SPF clothing, uses a super SPF umbrella and travels in a car with heavily tinted windows and she still finds ways to have fun with an indoor trampoline, pool parties at sunset, she is even part of a cheerleading squad.  Doctors say EPP is so rare only a few hundred people suffer from it in the US, while there's no cure, there is medicine that can help those affected to be less sensitive to the Sun, the drug is not yet approved by the FDA and Savannah hopes that one day there will be a cure, she says "I wish they would find the cure because, I don't like living with this, it's really hard."

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