Pamela Mayer Coull Personal Page
Over the past few years working with debra of America, I have met and become friends with many individuals and children who have Epidermolysis Bullosa (EB). In the adjacent photo, I am pictured with Ariana Covarrubias, a high school senior living in Los Angeles who has EB. She won debra’s Spirit Award in 2015 for her efforts to raise awareness for EB and her strength to “keep fighting” every time she faces the pain of EB. Despite our smiles in the photo, EB is an extremely debilitating and painful disease. Having EB is like living with third degree burns all the time and from childhood. Although treatments are in development, additional funding is needed to find a cure, for better treatments, and to help patients and families burdened by expensive bandages.
Currently available treatments are not adequate to prevent the pain that individuals live with constantly or the grave risks of infection and skin cancer caused by chronic wounds and the genetics of the disease. As a result patient lifespans are significantly reduced. This is the reason that EB seems to be more prevalent in children. . . .EB is a lethal disease at an early age in many cases. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and also debilitating.
I am therefore running the half marathon this year to raise greater awareness and monies to fund the development of EB treatments and potentially a cure for EB.
Thank you for supporting me in my efforts to raise money and awareness for the EB community, and debra of America. Please click the button on the right of the page to complete your tax-deductible donation online.
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