Imagine living in sunny California when the sun itself gives you a full-body reaction that makes you scream and cry in pain.
But that’s the reality for 11-year-old Savannah Fulkerson, who has been making headlines because of her rare but intense reactions to sunlight exposure.
When she was four years old, she would cry “I burn!” if she was outside for more than 20 minutes. Her mother describes finding mysterious sores and blisters on Savannah’s hands, and listening to her daughter scream uncontrollably “like she got hit by a car.”
Doctors told Savannah and her family that she probably suffered from eczema, but that couldn’t explain the burning sensation she experienced in sunlight.
It wasn’t until two years ago — when Savannah was nine — that she was diagnosed with Erythropoietic Protoporphyria (EPP) at the Children’s Hospital of Los Angeles.
Erythropoietic Protoporphyria is an inherited blood disorder that involves a defect in hemoglobin production due to porphyrins (toxic compounds) that make a person extra sensitive to the sun. Savannah’s great-grandfather had the same condition.
Although people with Erythropoietic Protoporphyria experience swelling and redness, they are not technically allergic to sunlight — they’re having a reaction to sunlight.
There is currently no cure for Erythropoietic Protoporphyria, but there is a promising new drug in the works that may allow Savannah to experience sunlight without the agonizing pain.
Savannah is active in cheerleading and gymnastics, providing the practices are in indoors, and continues to use an SPF-coated umbrella and SPF clothing when she is outside. She is able to swim in the family pool, but only once the sun goes down.
Her family is fundraising to send the family to Camp Sundown (which supports families with EPP) and renovate their home in order to make Savannah more comfortable.
While Savannah and her family have taken comfort in knowing her true diagnosis, EPP is not the only form of reaction a person can have to sunlight.
Polymorphous light eruption (sometimes known as sun poisoning, or PMLE) is an itchy rash, bumps, or blisters caused by sun exposure (or tanning beds) in people who have photosensitivity. Experts believe almost 10 percent of the population may have PMLE, and sometimes people experience drug-induced photosensitivity from medications.
A true sun allergy — Solar Urticaria — is a very rare autoimmune disorder, and it causes symptoms similar to PMLE.
People who react to sunlight take precautions to stay out of the sun or wear sun-protective clothing, and some require steroid creams or medication.