Community Centers: Skin Care
Sophia Kelly MFA '10
They are sometimes called butterfly children, cotton wool babies, or crystal skin children. These euphemisms are used to describe people who have a painful and sometimes fatal genetic disease called Epidermolysis bullosa (EB), a condition resulting in skin so fragile that even minor friction can cause blisters and sores. Though the rare disease affects just one person in 50,000, Michele Disco MS ’10 knew there was a 50 percent chance her son would inherit the condition, since her husband had a mild form. They found out for sure when Miles was born. “We knew he had it right away. There was a big area of skin missing on his ankle,” Disco says.
In the beginning, figuring out Miles’ daily routine and taking care of his skin was often overwhelming. “It’s a difficult thing to adjust to. There is no way to prepare for holding a newborn who’s crying while you’re trying to pop his blisters,” she says. Though Disco’s husband also has EB, the disease manifests differently and with varying degrees of severity, so they had to learn about Miles’ specific condition as they went along.
Disco turned to the Internet for advice and discovered DEBRA, an international support group for parents of children with EB. On the message boards, Disco found another parent in the New York area. When they eventually met in person, the relief they both felt at meeting someone who understood what they were going through led them to co-found a New York chapter of DEBRA.
The other moms offered Disco advice about how to distract Miles during the time it took to take care of his blisters by giving the daily ritual a name, “boo-boo time,” and letting him watch videos or TV.
The group’s meetings would always include the kids, which gave them the opportunity to meet other people with EB. “Miles loves it—to be around other people who know what EB is and who don’t wonder why he has so many ‘boo boos.’” Miles’ father, on the other hand, had only met one other person with EB during his whole life.
In addition to providing moral support, the families shared their knowledge and expertise in different fields. The group included a teacher, who helped explain how to navigate the school system, as well as a physical therapist who gave advice about motor skills and physical development. The group also held fundraisers and regular events with invited speakers. The proceeds raised went to support research on EB.
The support group is less active now that most of their children are older. Miles is almost 8, and Disco is now adept at caring for his condition. But the core group of five families still holds an annual holiday party, and the benefits of the connection endure. “One of the children in the group passed away last year,” Disco says. “It’s huge to have the reassurance that there are other kids with EB who are moving around and smiling. It can be very isolating for care-givers who have children with more severe EB. There’s a lot of burnout.”
Miles loves it—to be around other people who know what EB is and who don’t wonder why he has so many ‘boo boos.’
Miles’ condition changed Disco’s life in fundamental ways. Not only did she learn to rely on outside support, but she also decided to change careers. A theatre lighting designer for many years, Disco’s schedule of late nights and lots of traveling was not conducive to family life, especially when her son needed so much care. When Miles was enrolled at the Early Childhood Center at Sarah Lawrence, Disco discovered the graduate program in human genetics. “I felt like it was supposed to happen,” she said.
Disco finished her thesis in May. Her research topic was adults living with EB. “Adults with EB often feel ignored because a lot of support groups are for kids, and doctors don’t know how to treat the condition in adults.” Disco’s work, which she hopes to publish, could serve to raise awareness and help another group of people dealing with the disease.