How Chelsea copes with 'the worst disease you've never heard of'

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How Chelsea copes with 'the worst disease you've never heard of'

A woman living with the worst illness you have never heard of suffers painful sores from hugs, damp weather, and even sleeping.

Chelsea Hoskins, 30, was born with Epidermolysis Bullosa (EB), an extremely rare genetic skin disorder in which blisters and wounds slowly heal from the slightest irritation.

She has no nails, no tooth enamel and her teeth are particularly small due to the disorder.

Chelsea, a business student from Manitoba, Canada, said, “It looks like I still have my baby teeth.

“If I scratch something on my leg, that blister can turn into an oddly shaped sore and I can have that on my body for anywhere from two months to a year.”

Often referred to as “the worst disease you have never heard of”, EB is caused by everyday occurrences such as wet weather or friction from clothing, raw wounds.

There is currently no cure and treatment is centered on ointments and bandages for wounds, which in turn can lead to more irritation.

“A bandage can irritate the skin and I get another outbreak,” said Chelsea.

Certain areas of Chelsea’s body need to be consistently bandaged to avoid breakouts, including the back of her head when she sleeps at night.

Their forearms, hip bones, and the folds of their arms are also prone to sores caused by movement or friction from their clothing.

Eye drops must be applied day and night to prevent your eyes from drying out and becoming prone to scratches on their surface.

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Humidity in summer can cause blistering of the skin, and wearing layers in winter can create friction, which is also irritating to the skin.

According to the Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA), around 200 children are born with EB each year in the United States.

When she was growing up, Chelsea couldn’t take part in any after-school activities. She tried to play the guitar, but it was too hard on her fingers.

Over time, her family and friends have learned to touch and hug her to prevent irritation. As an adult, she said she can make changes to maintain an active lifestyle.

“I can’t do a lot of cardio, but I can exercise at low intensity, and lifting barbells has improved mobility in my arm,” she said.

“It’s a trial and error of what I can and can’t do.”

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October 25-31 is Epidermolysis Bullosa Awareness Week, and Chelsea wants people to know that they and those affected are normal and want to be seen as such.

“We are really like everyone else, we want to be recognized and not stared at and we are comfortable, it just needs change,” she said.

“I don’t want people to take away that I’m unhappy.”

“I can still find happiness and joy in my life, I just have to be extra careful.”

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