New Treatment Inspires Hope for the Battle Against Sun Allergy

Savannah Fulkerson, 11, shares her story battling the rare disorder that forces her to stay indoors.
1:51 | 07/03/15

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Transcript for New Treatment Inspires Hope for the Battle Against Sun Allergy
Reporter: Savannah Fulkerson seems like your typical 11-year-old girl. But she's far from it. What's the hardest part for you. They point and laugh and that's really hard like they've called me like old lady hands and umbrella head. Reporter: It's as if Savannah is allergic to the sun. Any exposure can trigger excruciating pain and itching. This is home video her mom found from her last reaction. It just felt like lava was being poured on me. Sometimes she tells me she doesn't want to live anymore. She can't handle the pain. That's sad to hear. Reporter: A medical mystery starting when Savannah was just 4 years old. For years doctors thought it was eczema but Savannah's mother believed it was something else. I would tell them, I think she's allergic to the sun and they would tell me nobody is allergic to the sun. Reporter: But she was right. Doctors at children's hospital Los Angeles diagnosed Savannah with erythr ocho or Epp resulting in extreme pain within minutes of sun exposure. What was important was the combination of the age, the classic reports of burning and itching in the sun. Some pink rough skin over the knuckles and her fingers. Reporter: How do you explain this to your friends. I have to be in the dark. Dark is my home. Reporter: There's no cure. But a new study released just this week boasts the promising new drug that would allow people with Epp to live a more Normal life without the pain induced from sun exposure. For "Good morning America," Abbie Boudreau, Santa Clarita, California. So sad when you hear her say dark is my life. I hope that new drug works. All right, thank you, Abbie, for that story.

This transcript has been automatically generated and may not be 100% accurate.

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