How would you feel when your doctor tells you, you can’t step into the light of day ever in your life? No basking in bikinis at the beach. No hanging out with your friends during the day. Simple answer, it would suck!
Normally when you think of vampires and other creatures of the night it seems really cool because of the flawless bodies and supernatural abilities. But for 12-year-old Savannah Fulkerson, she has no exaggerated beauty or abilities. For her she’s been condemned to darkness, and ironically despite all this she manages to keep up with a sunny smile.
When Savannah was four, her mother recalls that she couldn’t stay out for more than a few minutes without screaming, “It burns! I want to go inside.” Her mom got concerned and took her to numerous doctors, some who said that it was a case of excema seeing that she had blisters and scars on her hands and nose mainly. Savannah’s mom was however not convinced. Finally they met Dr. Minnley Luu of Children’s hospital Los Angelus who diagnosed her with a rare condition known as Erythropoietic Protoporphyria (EPP). “It feels like lava poured on me and I’m burning from inside out,” Savannah described the pain.
EPP is a genetic condition that affects a component of blood cells that can lead to toxic compounds called protoporphyrin being released. These compounds can make the patient extremely sensitive to sunlight. It’s not a true allergy because the immune system is involved in the extreme reaction to sunlight.Patients often report swelling, redness of the skin or a burning sensation in sunlight according to the American Porphyria Foundation. So Savannah can’t be out during recess or swim until the sun goes down.
But despite the difficulties and ridicule from schoolmates, Savannah hopes that this won’t be her life forever. She hopes that one day she can own and live in a beach house. Watch her sad story here.