Heal The Butterflies
My name is Hannah. I am 13 years old. I love to run for good causes to help people! Please join me and help FIGHT EB and Heal The Butterflies!
What is Epidermolysis Bullosa (EB)?
Epidermolysis Bullosa (EB) — "The Worst Disease You've Never Heard Of."
Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), 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 is no treatment or cure. 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 debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with 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 donation. Every little bit helps us get closer to a cure for The Worse Disease You've Never Heard Of. Did you know that of those born with EB in 2014, 22% are no longer with us? That's why we count on the support of people just like you: Because the cost of doing nothing is too great.
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