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Heart Melting: The beautiful skin that burns from sunlight

 

CALIFORNIA:  It took years for doctors to determine the cause of 11-year-old Savannah Fulkerson’s suffering. Her symptoms were baffling — bordering on impossible to explain — but her mother’s intuition proved invaluable in arriving at the correct diagnosis.

Since the time she was 4 years old, spending any time outdoors was not just unpleasant for Savannah Fulkerson — it was downright torturous. Exposure to any sunlight would cause unexplained burns and blisters on her hands.

“We’d be outside about 20 minutes or so … she’d say, ‘I burn!'” Savannah’s mother Andrea Fulkerson said. Sometimes Savannah was in so much pain that she had “uncontrollable screaming like she got hit by a car,” her mother recalled. “She would just cry for hours on end.”

Concerned, Fulkerson took her daughter to several pediatricians and specialists seeking an explanation and help. The doctors said that Savannah had eczema, a condition that causes itchy and dry skin. But Fulkerson knew it had to be more than that; she was certain her daughter’s mysterious blisters and sores had to be related to sunlight. “It’s like she’s allergic to the sun,” Fulkerson remembers telling the doctors.

After five years of tests, the family found help at the Children’s Hospital of Los Angeles. There, doctors finally diagnosed Savannah with Erythropoietic Protoporphyria, a rare and painful genetic condition in which the skin is hypersensitive to sunlight.

“Chemical reactions produce damage in the skin as well as other organs,” Savannah’s physician, Dr. Minnelly Luu, of Children’s Hospital Los Angeles told ABC News about the rare disease.

 

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Although there is no cure, Fulkerson said it was a relief to have Savannah’s condition diagnosed so that now she can protect her. Last year, Savannah even traveled to meet with another girl who has the same condition.

“She loved it,” Fulkerson said. “She said she didn’t have to explain anything … They have fun together and don’t have to explain anything.”

Now 11, Savannah is on the cheerleading squad and participates in indoor gymnastics. But she still faces daily challenges avoiding sunlight. She can’t sit outside with the other kids during recess and lunch, and she has to wait until the sun goes down to swim.

 

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<blockquote class=”twitter-tweet” data-lang=”en”><p lang=”en” dir=”ltr”>Savannah in the Dark | Medical Expenses – YouCaring <a href=”http://t.co/iEKFuNFRRI”>http://t.co/iEKFuNFRRI</a></p>&mdash; Savannah Fulkerson (@Savannah_EPP) <a href=”https://twitter.com/Savannah_EPP/status/623582591254302720″>July 21, 2015</a></blockquote>
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“I wish they would find a cure because I don’t like living with this. It’s really hard,” Savannah Fulkerson said.

She shares her hopeful vision for the future with reporters, confessing that she aspires to have a house on the beach. Savannah declares, “when I get older, it’s not going to change what I want to do … it’s not going to tear me down, it’s going to build me up.”

 

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