The content below was submitted by Rubenstein Communications, Inc.
Michael “Mick” Russell, 40, of Larchmont, will be running the ING New York City Marathon on Nov. 4 to raise money for The Dystrophic Epidermolysis Bullosa Research Association (DebRA) of America.
Russell, who works in commercial real estate, has a 6-year-old daughter, Isabella, with a type of EB called Dowling-Meara Simplex, where babies are often born with widespread blisters on the face, body and limbs He is trying to raise her to have as normal a life as possible despite the fact that her sensitive skin blisters very easily and she has to be much more careful than other children while playing. Still, he said his daughter “deals with it and doesn’t make a big thing out of it.”
This will be Mick’s first marathon, although he believes he can handle the endurance since he completed an adventure hike in 2008 that took him over 150 miles in five days. He would like to finish the marathon in about four hours and 30 minutes.
EB is a rare genetic skin disease (1 out of every 50,000 live births) that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. To date, there is no cure. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB affect not only the skin but the internal organs and can lead to eventual disfigurement, disability and often early death. Some people with EB are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal.
The only treatment for EB is daily wound care and bandaging. The daily routine is a grueling, multi-faceted daily regimen. Caregivers, often parents or family members of EB children, must work in tandem with medical professionals to determine and administer different treatment methods to care for EB wounds.
With skin as fragile as a butterfly wing, EB patients are dubbed “Butterfly Children.” On the outside physical wounds prevent them from normal daily activities enjoyed by other children. Clothing and pajamas can often stick to their skin. Bath time can take longer than normal and be very painful. Some children, whose esophagus is affected by the disease, can have difficulty swallowing even their own saliva, and need to have special medical procedures several times a year so that they can swallow liquid.
DebRA is the only national nonprofit dedicated to funding research and providing services and programs for those with EB, called “the worst disease you’ve never heard of.” Although it’s true that most people have never heard of this disease, most likely they’ve encountered someone with it or know someone who has a child or other relative who has suffered or died as a result of it.