The Rare Skin Disease Parents Need to Know About


The Washington Post published an article recently detailing the lives of two little girls born with the same rare health condition. Ella Murray, 10, and Elizabeth Federici, 13 months, were born with the disease epidermolysis bullosa (EB). It's a condition so rare that specialists call it "the worst disease you've never heard of," because this genetic connective tissue disorder leaves cells without an essential protein needed for skin layers to adhere. This means that babies born with this condition have skin so susceptible to tears and blisters in response to the lightest of touches that they're often left in constant pain and discomfort. 


Babies born with EB are referred to as "butterfly babies" by doctors because their skin is as delicate as a butterflies wings. According to Cosmopolitan, there is currently no known cure and  "irritants as benign as a sock seam, bowel movement, or change in temperature can cause severe blistering and scarring so bad it can ultimately fuse fingers and toes together." 

Only 200 American babies a year are born with EB, according to DEBRA. Due to the rarity of the disease, there has been a lack of funding for research to help cure it. EB can be both inherited and develop from a genetic mutation. Another confounding fact about EB is that the severity of the disease is wide ranging. Some, like 10-year-old Ella, suffer severely due to their diagnosis. There are others, however, who only have mild cases of the disease. 


You can help those suffering from EB by donating to DEBRA, which helps fund ongoing research, at Debra.Org/Donate.


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