When Savannah’s symptoms began appearing at age four—her skin turning an angry shade of red and then breaking out in blisters—the doctors couldn’t pinpoint exactly what was causing them.
ABC News reported that at first the doctors said she had eczema, but Savannah’s mother Andrea was skeptical. “It’s got to be more than eczema,” she recalled saying to the doctors.
Then she noticed that her daughter’s symptoms began appearing every time she went to play outside in the Los Angeles sun.
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Savannah would be reduced to uncontrollable screaming as though she got hit by a car and she would cry for hours on end, Andrea recalled.
To alleviate the pain, Andrea would wrap her daughter’s hand in bags of ice. Other times she would draw a cold bath. Nothing seemed to work.
Photo credit: ABC News
“It felt like lava was being poured on me,” Savannah described her symptoms to reporters, “like it burned from the inside out.”
Then when Savannah was nine, Children’s Hospital Los Angeles, came to the correct diagnosis. She had erythropoietic protoporphyria (EPP).
According to American Porphyria Association, EPP is a rare genetic condition which releases a compound called protoporphyrin. Those who have it are extremely sensitive to light.
Its common symptoms include swelling, burning, itching, redness of the skin, and mild to severe burning pain.
What is EPP?
Thus far there are no known cures for EPP, but there are ways to prevent the symptoms from appearing. Most of them focus on preventing as much sun as they could from getting in contact with the skin and limiting the amount of time spent outside.
Andrea now dresses Savannah in UV-protective clothing and relegating her daughter in dark rooms.
Despite her condition, Savannah doesn’t let the darkness consume her. She doesn’t care that her classmates tease her, and she remains optimistic that a cure will be found.
Photo credit: ABC News
In the evening, Savannah swims. There is also a trampoline inside the house to keep her entertained, and she never complains whenever she has to wear her protective clothing every time she goes outside.
Her biggest dream is to have a house by the beach. Talking about the future, she said, “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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