Raising awareness for rare skin disease

NEW LONDON, Conn. (WTNH) –  A woman now living in Connecticut, is defying the odds of a rare skin disease. Fatima Perez is one of the oldest survivors of  Xeroderma Pigmentosum, of which there is no cure or treatment.

It’s a warm sunny day but Fatima is protected from head to toe. She was born with Xeroderma Pigmentosum- or XP — making her sun sensitive from the ultra-violet rays of the sun. But her parents were not aware of it’s vicious impact.

“Since my parents didn’t know how dangerous it was for me to be exposed to ultra-violet rays, I grew up under the sun all my life,” said Fatima.

Life under the tropical sun of the Dominican Republic has led to countless skin cancers and left her blind.

Fatima said, “When I first came from the Dominican Republic, they did a lot of skin cancer removal from my cheeks, both cheeks, my shoulder, my leg, my arms.”

Dr. Mary Ann Bentz at Dermatology Associates of Southeastern Connecticut explained, “So from the multiple skin cancer surgeries, she has lots of scars. From the sun exposure, there’s the excess freckling.”  She routinely checks Fatima for skin cancer, “”Often if you can diagnosis the disease early, usually by the age one or two, you can prevent long term damage.”

Prevention by means of limiting UV exposure. XP is not screened at birth — so parents Dr. Bentz stressed, must be vigil for the early signs, “Easy sunburns, multiple freckles, what’s called photophobia where people are sensitive to the light, having pain where light hits their eyes.”

One of Fatima’s brothers died of XP at nine years old so her family didn’t have much hope for her. She said, “When I was 20 years old, they got a coffin built for me.”

Fatima defied the odds and founded the non-profit XP Grupo Luz de Esperanza or XP Light of Hope Group. She said, “My mission is to help others with my disease to survive, to have a light of hope.”

The non-profit group is kicking off an awareness campaign. Fatima invited her doctors and a nationally known researcher to talk about XP Thursday night in Hartford. It’s starts at 6 p.m.

For more information, you can log onto their website here.

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