LOS ANGELES (KABC) -- For years, the Fulkerson family was in the dark about what was wrong with 11-year-old Savannah, but they had a clue.
"My mom always thought it was the sun ever since I was little and it started to happen," Savannah Fulkerson said.
At age four, mysterious blisters and sores showed up on her hands. Various doctors told her mom it was just eczema. That didn't explain how sun exposure made Savannah feel like she was being burned alive.
"All of a sudden she would just start screaming," Andrea Fulkerson said.
But no doctors believed anyone could be allergic to sun.
At 9, doctors at Children's Hospital Los Angeles diagnosed Savannah with an inherited disease called Erythropoietic Protoporphyria or EPP. Defects in hemoglobin production result in toxic compounds called porphyrins, which make her sensitive to the sun.
EPP is very rare. Doctors aren't sure how many people have this condition in the U.S. The best guess is that there are only a few hundred people.
Symptoms can range in severity. In Savannah's case, a few minutes in the sun is enough to cause excruciating pain.
"It's just pain. It feels like lava is being poured on you. It really hurts," Savannah Fulkerson said.
No cure for the condition is known, so Savannah focuses on sun protection. She wears SPF clothing and essentially lives in the dark.
"I wish they would find a cure, because I don't like living with this. It's really hard," Savannah Fulkerson said.