— -- Around the time Savannah Fulkerson turned 4, she became unable to spend any length of time outdoors.
“We’d be outside about 20 minutes or so … she’d say, ‘I burn!’” recalled Savannah’s mother Andrea Fulkerson. Fulkerson remembers Savannah in so much pain she had “uncontrollable screaming like she got hit by a car.”
“She would just cry for hours on end,” said Fulkerson.
For years Fulkerson took her daughter to multiple pediatricians and other specialists looking for a cause. Fulkerson said that doctors told her that Savannah had eczema, even though she was left blister-like scars on her hands from the sun.
“It’s like she’s allergic to the sun,” Fulkerson remembers telling the doctors when they saw Savannah. Eventually after five years of tests and questions, the family were finally able to get help at the Children’s Hospital of Los Angeles, where Savannah was diagnosed with a rare condition called Erythropoietic Protoporphyria or EPP.
The genetic condition affects a component of blood cells that can lead to toxic compounds called protoporphyrin being released. These compounds can make the patient extremely sensitive to sunlight. It's not a true allergy because the immune system is involved in the extreme reaction to sunlight.
Patients often report swelling, redness of the skin or a burning sensation in sunlight according to the American Porphyria Foundation.
Savannah’s physician, Dr. Minnelly Luu, of Children’s Hospital Los Angeles told ABC News affiliate KABC-TV that rare disease these “chemical reactions produce damage in the skin as well as other organs.”
Fulkerson said it was a relief to finally have Savannah’s diagnosis even though there is no cure approved. She said now that she knows the diagnosis, she can protect Savannah from the sun.
Now age 11, Savannah is able to be on the cheerleading squad and participate in gymnastics as long as practices are indoors. Last year she traveled to meet another girl with the rare condition.
"She loved it," Fulkerson said of Savannah. "She said she didn’t have to explain anything ... They have fun together and don’t have to explain anything."
But inspite of the progress she's made Savannah still faces challenges. During recess and lunch Savannah can't be with other children outside. When she wants to swim she has to wait till the sun goes down to jump in the water.
"I wish they would find a cure, because I don't like living with this. It's really hard," Savannah Fulkerson told KABC-TV.