The Worst Disease You’ve Never Heard of is Just as Common as Cystic Fibrosis and ALS

Have you heard of Epidermolysis Bullosa? Not many people have. Yet, it’s as common as ALS and Cystic Fibrosis. It’s kind of a tongue twister - we call it “EB” for short.

EB is a rare connective tissue disorder with many genetic and symptomatic variations, and is as complicated as it sounds. All types share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Many newborns are born with missing skin, and as they grow, brushing teeth, wearing clothing with seams, or even giving hugs can cause skin to blister or tear away. Internal organs and bodily systems can also be seriously affected by the disease, and in some cases it is lethal before the age of 30.

That’s why we, at debra of America, describe it as “The Worst Disease You’ve Never Heard Of.”

There is no cure for EB – daily wound care, pain management, and protective bandaging are the only options available for those with the rare disease. Over the next year, an estimated 200 babies will be born with EB in the United States. That’s 200 more reasons why we are doing something today.

debra of America provides a full support system for families to address the challenges they face in their everyday lives. Our Nurse Educator Program, which educates and provides resources on supportive care for patients, parents and medical professionals, and our Wound Care Distribution Program, which sends specialized protective bandages and wound care supplies to the many out there who are in dire need, are just two of the six direct services that we offer to the community.

We also drive the research that will lead to real treatments and a cure. Our research efforts have led to finding the genetic basis of EB, and address the most life-threatening aspects of this disease. Our most recent funding includes a Thomas Jefferson University study that looks at reducing inflammation and inhibiting squamous cell carcinoma, a form of skin cancer that is often deadly for those with EB.

Your support, no matter the size, will help those affected by this devastating disease.

To be part of this support system:

1. Donate now via credit card: Visit https://www.debra.org/give
2. Double your donation with a matching gift: See if your employer will match your donation by visiting https://doublethedonation.com/debra
3. Give via payroll deduction: Donate to debra of America with a tax deductible gift via payroll deduction through your employer’s workplace giving program (CFC#11990 if you are a military or federal employee participating in the Combined Federal Campaign). Learn more at http://www.debra.org/work
4. Support debra of America through a well-designed corporate philanthropy program. As debra of America’s workplace giving partner, America’s Charities can help companies design and implement a program centered on supporting their work - through workplace giving campaigns, employee fundraising, cause-focused signature programs, volunteer management, Dollars-for-Doers and other employee engagement and philanthropic initiatives. Click here to get started.

Example company-sponsored debra of America employee giving campaign using America’s Charities powered by Causecast solution:

To learn more about EB, and debra of America, visit: https://www.debra.org