Film Gives Hope to Patients with Rare DiseaseApril 20th, 2016 by Casey Flores
Imagine never being able to see the sky. That could be a reality for the few diagnosed with a rare skin disease that keeps people from being exposed to sunlight—unless they have window film installed everywhere they go.
Xeroderma Pigmentosum (XP) is a rare inherited disease that causes a person to be extremely sensitive to the damaging effects of ultraviolet radiation. Undiagnosed and untreated, it can lead to the early onset of skin cancer and blindness, according to the XP Family Support Group. Approximately 20 percent of people with XP also develop progressive neurological disease.
Michele Milota, executive director of the XP Family Support Group, is trying to cut down on the limitations to children diagnosed with the disease. She has a 13-year-old daughter with XP and says window film helps to reduce those limitations.
“These kids and patients have to have 100 percent UV protection,” she says. “They can’t be in their own car, school and homes without window tint. Without window tint, they cannot live a normal life.”
So Milota is on a mission to form partnerships with tint shops nationwide to help families affected by the disease. But she’s been met with resistance by some who don’t believe her when she tells them the effects of the disease.
“About 90 percent of tinters are willing to help,” she says. “The other 10 percent think we’re just looking for handouts,” which she understands due to how rare the disease is. (There are only about 350 cases in the U.S., she says).
One of her strategic partners in fighting the disease has been Rocky Shaw, West Coast territory manager for 3M Window Film.
“For the past 20 years, we’ve been helping out patients with XP,” he says. “3M donates film on any car, school or home of those affected.”
He reaches out to the dealer network and is doing his part to raise awareness.
“It’s a lot of work to go donate labor,” he says. “It’s rarer than ALS.”
One company that’s helped with several installations for patients with XP is JH Auto in Sacramento, Calif.
“We install this for the patients at absolutely no cost for them,” says Amh Luu of JH Auto in Sacramento, Calif. “Just last month we did an installation for two—they were sisters.”
She says she vets the potential clients to make sure they are truly in need.
“I always have Michele verify that they are legitimate patients,” she explains.
To learn more about the disease, visit the XP Family Support Group here.
Tinters who are interested in volunteering labor in their region may contact Milota by clicking here.