Skin disease gives Waterford woman a mission
Waterford - Fatima Perez's biggest challenge is also her main passion, and thanks to her persistence, her story will soon be told in her native country, the Dominican Republic.
Perez, 45, has a rare genetic disorder called xeroderma pigmentosum that leaves her highly sensitive to ultraviolet light and susceptible to skin cancer and other effects. As a child growing up on the tropical island, where few people - including her parents - understood the disease, she spent far too many hours in the sun, unprotected, and ultimately lost most of her eyesight and incurred severe skin damage.
"They didn't know how dangerous it was," said Perez. "But I have learned a lot about how to take care of myself."
Since immigrating to the United States 11 years ago, she has been able to tap into better medical care and volunteered to be a subject for National Institutes of Health researchers studying the rare disease. Though there is no cure, regular visits to her local dermatologist, Dr. Mary Ann Bentz, to ensure that any new patches of skin cancer are found and removed early, and to doctors at Yale-New Haven Hospital who provide other specialized care, have helped dampen the disease and its effects.
"I am a survivor," Perez said.
But Perez's proudest accomplishments aren't related to how she's handled the medical condition itself. They include learning English; becoming a citizen; obtaining her high school equivalency diploma; getting involved in the Xeroderma Pigmentosum Society, a support group; and being an advocate for better understanding and awareness of the disease, especially to Spanish-speaking people. She is one of only a few Spanish speakers in the society, she said, and its information and programs are only in English.
"I want to bring my message to the Latin American community," she said. "I feel God has left me here for this purpose."
As part of her ongoing efforts, Perez contacted a television station in her home country. On Thursday, a crew from the Telecanal network flew in to New York from the Dominican Republic and on Friday was traveling to her Waterford apartment to begin interviewing her and to take her back to the city for dinner. The segment will air on a show called "Todos con Emely," or "Everyone With Emily," named for its 13-year-old host.
"This has been my dream for the past 11 years, to help bring awareness," said Perez, adding that she has tried to interest American shows in her story, too.
On Saturday the crew joined Perez in a Xeroderma Pigmentosum Society event at 8 p.m. in New York's Central Park. She and other society members participated in a "Walk in the Park for XP," to raise money for research and educate the public.
"I'm so excited," Perez said Friday afternoon as she awaited the arrival of the Dominican TV crew.
Bentz described Perez as one of her favorite patients, with a positive attitude, strong faith, persistence and fortitude in the face of huge challenges. Perez lives most of her life indoors and must constantly guard herself against UV light. Bentz treats Perez in a windowless exam room in her New London office, illuminated by an incandescent light bulb.
"She's such an advocate, it's wonderful," Bentz said.
Throughout her medical school training, she said, she never saw a patient with the disease, and when Perez came to her, she had to learn all she could about it. Raising awareness about the condition is important, she added, because the sooner it's diagnosed, the better.
"If you know your baby has this, you can start protecting them from the sun," she said. "But it's like an orphan disease, so it's not something you think about."
Perez, Bentz said, is "pretty remarkable in terms of what she's done with her life."