11-year-old girl is suffering from rare sunlight allergy

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In this world, there are so many different kinds of allergies, but can you imagine being allergic to sunlight? This allergy would make you fear being outside in the daylight. While this fear almost seems unbelievable, for 11-year-old Savannah Fulkerson, that fear is a reality.

Savannah has lived a very different kind of life for as long as she can remember. By the time she turned four, she was unable to spend any prolonged amount of time outdoors. Her mother began finding mysterious blisters and sores on her daughter's hands.

Savannah's mother Andrea Fulkerson recalls the immense pain that her daughter felt from a young age. Andrea said that after being outside for about 20 minutes or so, her daughter would say, "I burn!" She remembers Savannah screaming uncontrollably "like she got hit by a car."

While some doctors brushed it off and told Savannah that it was probably eczema, that diagnosis didn't explain the insane burning that the young girl felt after spending time in the sun.

When Savannah was nine years old, she went to Children's Hospital Los Angeles where doctors diagnosed her with EPP, or Erythropoietic Protoporphyria. This inherited disease (which Savannah's great-grandfather also had) deals with defects in hemoglobin production. The hemoglobin production is defective as a result of porphyrins, toxic compounds that essentially make Savannah extra sensitive to the sun.

When asked about how she explains her condition to her friends, Savannah told Good Morning America, "I have to be in the dark. The dark is my home." Savannah can't join her classmates for recess and lunch outdoors, and if she wants to jump in the pool, she has to wait until the sun goes down.

Since this diagnosis is very rare, doctors are unsure of how many people suffer from this condition in the U.S., and each case is different. The severity of symptoms range on a very wide spectrum, but for Savannah, a mere few minutes in the sunlight cause her excruciating and unbearable pain.

She compares the feeling to having lava poured on you. "It really hurts," Savannah said.

While there is currently no cure for EPP, doctors are working to finding one. A newly released study mentioned a potentially promising new drug that may allow people with EPP to live a more normal and less painful life.

Savannah told Los Angeles news channel ABC7 KABC:



Since there isn't currently a cure, the young girl will continue to make an effort to focus on sun protection. Savannah will continue to wear SPF clothing, use an SPF-coated umbrella outdoors, and unfortunately, essentially live in the dark.

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