MILL VALLEY, CA (KRON/MEDIA GENERAL) — It’s a disease so rare it’s believed to effect fewer than 500 people in the United States.
A young girl in Marin County, California, has the brutal condition – she is allergic to the sun. There is no medication or fix for the symptoms that plague Mackenzie Landsness.
Even playing outside can bring pain to Mackenzie.
“It feels like you are sticking your hands inside the sun – or being stung by a million bees,” Mackenzie said.
“That night, she was screaming in pain. ‘My hands are burning, my hands are burning, my feet are burning,” said Mackenzie’s mother, Laurie.
After visiting 12 doctors and specialists, she was diagnosed with Erythropoietic Protoporphyria, or EPP, a rare genetic condition that makes a person extremely sensitive to sunlight.
Now 7 years old, Mackenzie can’t expose her skin to the sun. When she goes outside, she covers up as much as possible: No shorts or sandals, and always sunscreen, gloves, a scarf and hat.
“It feels really bad being allergic to the sun,” Mackenzie said.
Mackenzie’s outdoor time is limited. Even if she manages to stay covered up, after a while she gets overheated under all of her layers of sun protection.
“It’s hard. I’m not going to lie. But, you know, there could be other diagnoses that are a lot worse,” Laurie Landsness said.
— Matt Jaworowski from Media General contributed to this report.