Step into the Light! Treating EPP

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For people with extreme sensitivity to light a new treatment is allowing some patients to step back into it. (KFSN)

For most of us, sunlight is essential for good health. It provides a dose of vitamin D, it's been shown to improve mood, and may even lower blood pressure. But for people with extreme sensitivity to light, even a few minutes in the sun can cause searing pain and no amount of sunscreen will help. But a new treatment is allowing some patients to step into the light.

Andrew Turell looks just like any other confident, young professional. But just a few months ago, he would have stood out in this lunchtime crowd.

"I was always wearing a long-sleeved collared shirt and running from shadow to shadow as I was walking down the street," Turell told Ivanhoe.

Turell has a genetic condition known as EPP that makes him ultrasensitive to light. "My parents remember bringing me on beach vacations and I would be up all night, screaming in pain," he recalled.

Turell's skin rarely burned, or showed any sign of the condition, making it difficult to diagnose.

Manisha Balwani, M.D., M.S., Associate Professor at Icahn School of Medicine at Mount Sinai said, "You may not see anything. For some people, you may see redness and swelling during that acute phase."

Dr. Balwani is a genetics expert who was one of the investigators on a US trial of a new drug to treat EPP, a synthetic hormone called afamelanotide.

"It's about the size of a rice grain, that's inserted under the skin, in the subcutaneous tissue by a needle," Dr. Balwani explained. The drug is released slowly over several days, and protects EPP patients for about two months.

"Within a few days, it starts giving these patients a tan, a natural tan. And this tan acts as a barrier against the sun," Dr. Balwani continued.

For Turell, the implant has finally allowed him to enjoy the outdoors again, pain-free.

Although the trial has ended here, Turell now travels to Europe to receive the implant. The drug is approved for use in Europe, but is still considered investigational in the US. The recent trial was for adult patients and Dr. Balwani says additional study on pediatric patients is needed.

If you would like more information, please contact:

Manisha Balwani, M.D., M.S.

Icahn School of Medicine at Mount Sinai

1 Gustave L. Levy Place

New York, NY 10029

212-241-0915
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