Fast Facts about EB

As patients, family members, caregivers and advocates, we each experience epidermolysis bullosa and its physical and emotional impact in unique ways. While interacting with those unfamiliar with the disease, we have an invaluable opportunity to educate others and motivate them to join the cause to raise funding and interest in supporting additional research for better treatments and ultimately, a cure for EB.

We’ve gathered some key points about EB worth sharing with others who are just being introduced to the condition, as well as some helpful links to learn more on the subject. Feel free to forward the link and share with your neighbors, classmates and colleagues, local media, business and community leaders and even legislators you might come in contact with, who can lend additional support to help spread the word.

  1. The phrase epidermolysis bullosa refers to the outer layer of skin (the epidermis) and “lysis,” representing a breakdown or deconstruction. “Bullosa” is a kind of blister.” The name literally refers to the breakdown and blistering of the outer layer of skin. (http://www.ebinfoworld.com/abouteb.htm)
  2. According to the National Institutes of Health (NIH), an estimated 2 to 4 of every 100,000 people in the U.S. have a form of EB, or approximately 12,000 people. (http://www.niams.nih.gov/Health_Info/Epidermolysis_Bullosa/default.asp)
  3. The NIH also notes that EB is a disease that shows no preference in terms of age, race, gender or ethnicity. It tends to impact males and females at about the same frequency and can sometimes take months or even years following birth to be diagnosed.
  4. EB is most commonly inherited as the result of a defective gene among those ten or more genes responsible for skin formation, but it may also result from a random gene mutation. The outcome may be one of three different main subtypes of EB: epidermolysis bullosa simplex, junctional epidermolysis bullosa and dystrophic epidermolysis bullosa. (http://www.mayoclinic.com/health/epidermolysis-bullosa/DS01015/DSECTION=causes)
  5. EB is most often identified by the following common symptoms: blisters on the skin, blisters on other internal membranes such as the throat or respiratory tract, thickening or absence of fingernails or toenails, thickened skin on his hands or feet, and anemia. (http://dermatology.stanford.edu/gsdc/eb_clinic/eb-faqs.html)
  6. While EB itself is not contagious, an EB wound can become infected. EB also can lead to a number of other complications including skin cancer (http://www.niams.nih.gov/Health_Info/Epidermolysis_Bullosa/default.asp#5) as well as kidney and urinary problems. (http://www.ebnurse.org/complication/index.html)
  7. Treatment of EB is a multi-disciplinary approach, since the condition affects so many different systems in the body. Patient care often involves the collaboration of the daily caregiver or nurse, primary care physician, dermatologist, pediatric dentist, nutritionist, teachers, family members and other specialists who may be needed for specific care needs such as a gastrointestinal specialist or a psychologist. (http://www.debra.org/abouteb#treated)
  8. Standard EB treatments center on the prevention and care of blisters and treatment of infection in existing wounds. On some occasions, patients may need to make changes to their diet or undergo corrective surgery to ensure proper digestion of food or proper swallowing in the esophagus. (http://www.internationalebforum.org/uploads/media/epidermolysis_bullosa_qa.pdf)


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