At the tender age of 4, Savannah Fulkerson became unable to stay outdoors for any length of time.
“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.
Years went by with multiple visits to pediatricians, doctors and numerous other specialists in the search for a cure. The Fulkerson’s were getting no success with doctor’s telling them their daughter Savannah had eczema, when she was actually being left with blister-like scars on her hands from the sun.
“It’s like she’s allergic to the sun,” Fulkerson recalls informing the doctors when they first tended to her. Almost 5 years passed of constant probing and testing when eventually the family were able to get the answers they needed. Savannah was diagnosed with a rare condition called Erythropoietic Protoporphyria or EPP.
This type of genetic condition affects the blood cells by changing a component in them that can turn into toxic compounds called protoporphyrin. When these compunds are release, the patient becomes highly sensitive to sunlight. This is not regarded as a true allergy mainly because the immune system is involved in a the extreme reaction to sunlight.
Symptoms displayed by patients can often be swelling, redness of the skin or burning sensations in direct sunlight.
Dr.Minnelly Luu, of Children’s Hospital Los Angeles who was Savannah’s physician reveals that with this rare disease “chemical reactions produce damage in the skin as well as other organs.”
Savannah’s mother said it was a big relief to finally get the answers to her daughters mysterious illness. Now that she knows the diagnosis she can take the appropriate steps to protect her daughter.
Now age 11, Savannah is able to be on the cheer-leading 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.”
Despite all the progression she has made Savannah still faces daily challenges. During school she is unable to go out and play with her friends during recess and lunch. Being a lover of swimming means she can only swim at night when the sun goes down.
“I wish they would find a cure, because I don’t like living with this. It’s really hard,” Savannah Fulkerson said.
Hopefully science will eventually find a cure to this cruel somewhat debilitating condition.
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