'The worst disease you've never heard of' makes children's skin as fragile as a butterfly's wings One in 20,000 people are born with the disease a year.

Nadine Brown checks in on Ella Murray during her fourth grade class at James K. Polk Elementary School May 11, 2017 in Alexandria, VA. She has a rare skin disease - Epidermolysis Bullosa or EB. Babies born with EB or are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images) less Nadine Brown checks in on Ella Murray during her fourth grade class at James K. Polk Elementary School May 11, 2017 in Alexandria, VA. She has a rare skin disease - Epidermolysis Bullosa or EB. Babies born with ... more Photo: The Washington Post/The Washington Post/Getty Images Photo: The Washington Post/The Washington Post/Getty Images Image 1 of / 26 Caption Close 'The worst disease you've never heard of' makes children's skin as fragile as a butterfly's wings 1 / 26 Back to Gallery

Sick children break hearts, but this disease is referred by specialists as "the worst disease you've never heard of."

The Washington Post highlighted the story of two children who were born with it, including 13-month-old Elizabeth Federici, of Eldersburg, Maryland and 10-year-old Ella Murray, of Alexandria, Virginia.

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The disease is epidermolysis bullosa (EB). The Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA) defines EB as a genetic connective tissue disorder where skin cells lack a protein needed to keep skin layers adhered to each other. Because the protein is missing, the skin is extremely vulnerable to tears and blisters from the slightest friction. The tears and blisters caused by the friction can leave the patients in constant pain and discomfort from itchy scarring, according to DEBRA.

Video: Living with Butterfly Skin

The children born with the disease are often called "butterfly children" because their skin is as fragile as the wings of butterflies.

Federici and Murray are both living with the disease and in order to ensure that their wounds don't get infected, their parents must pop their blisters and wrap their children's wounds several times a day. The process is extremely painful for the children and by default the parents as well.

"There were nights I would just lie in bed and cry," Katie, Murray's mother, told the Washington Post. "Yes, it was all very emotional, but I was just so physically exhausted that I couldn't function."

Anne Lucky, the pediatric dermatologist who works with the Federicis, told the Post, "It's very hard to inflict pain on your child every day."

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"Even now," Heather Federici, Elizabeth's mother told the Washing Post, "if Kevin is trying to pop a blister on her foot and he tells me to hold her leg, I don't like to hold her leg, because if I'm holding it hard I don't know if it's going to make her skin come off."

DEBRA reports that 1 out of 20,000 births in the United States - about 200 children each year - are born with EB. There is no treatment or cure and while it's a genetic disorder, sometimes children can get the disease without any trace in their parents' genetic makeup.

Medical experts are continuously trying to unearth a cure for EB and DEBRA welcomes donations for ongoing research. To read the full story from the Washington Post about the difficulties of living with EB, click here.