I will be joining more than 40,000 other runners on Sunday, Nov. 4, as we make our way through 26.2 miles of roads and bridges through Staten Island, Manhattan, Brooklyn, Queens, the Bronx and then back to Manhattan, for the ING New York City Marathon.
Running the marathon will be one of the biggest challenges of my life, as even walking can be extremely painful for me, due to a rare genetic disorder—only found in 1 out of 50,000 people in the United States—called Epidermolysis Bullosa (EB), which causes the skin on my hands and feet to be thinner than normal. As a result, my skin blisters and tears easily and is very painful. I am doing my first marathon to raise money for DebRA of America (The Dystrophic Epidermolysis Bullosa Research Association of America—www.debra.org). DebRA is the only national non-profit dedicated to funding research and providing services and programs for those with Epidermolysis Bullosa (EB)—“the worst disease you’ve never heard of.”
Most of you reading this have never heard of this disease but it’s likely you’ve encountered someone with EB or know someone who has a child or other relative who has suffered or died as a result of it. I consider myself one of the more fortunate people with EB as I have one of the milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal. At 39, I have survived into adulthood as the disease only affects my skin and not my internal organs or tissues. Still, I have to be cautious with things that most of us take for granted, such as shaking hands with someone wearing metal jewelry. And, as a Realtor, I am shaking hands a lot!
As far as running goes, if I run without socks in Vibram running shoes—low impact shoes—I can tolerate long distances. I still have to follow up every run by rubbing my feet with moisturizers and Body Glide. Ice baths help somewhat, too.
However, for people who have more severe forms of EB, the disease 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. 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.
To learn more about my journey, please visit my blog at barefoot262.tumblr.com.
To learn more about Epidermolysis Bullosa (EB) and DebRA of America, please visit www.debra.org.