I am running 8 miles with a weighted vest (15lb) to raise money for a great cause. EB is often described as “the worst disease you’ve never heard of”. Please donate what you can or raise awareness for this great charity.
Epidermolysis Bullosa, or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB).
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. The list of complications and secondary illnesses can be long and requires multiple interventions from a range of medical specialists. EB affects all genders and racial and ethnic groups equally.
There is no treatment or cure, but researchers are making tremendous strides in developing therapies. The current standard of care is supportive, which includes daily wound care, pain management, and protective bandaging. More info can be found here: https://www.debra.org/about-eb/eb-depth
Thank you for taking to learn more about this cause and please do spread the word even if you're not in a position to donate.