A woman with “the worst disease you’ve never heard of” suffers painful wounds caused by hugs, humid weather and even sleeping.
Chelsea Hoskins, 30, was born with a non-lethal form of Epidermolysis Bullosa (EB), a group of extremely rare genetic skin conditions that cause slow-healing blisters and wounds to form from the slightest irritations.
Chelsea also has no nails, no enamel on her teeth and her teeth are extra small due to the disorder.
“It looks like I still have children’s teeth,” said Chelsea, a business student from Manitoba, Canada.
“If I scrape my leg on something, that blister can turn into an odd-shaped wound and I can have that on my body anywhere from two months to a year.”
Often referred to as “the worst disease you’ve never heard of,” EB causes raw sores from such everyday occurrences such as humid weather, or friction from clothing.
There’s currently no cure and treatment focuses on ointments and bandaging for wounds, which in turn can lead to more irritation.
“Having a bandage on can irritate the skin and I’ll get another break out,” Chelsea said.
Certain areas of Chelsea’s body must be consistently bandaged to prevent breakouts, including the back of her head when she sleeps at night.
Her underarms, hipbones and the creases of her arms are all also susceptible to wounds caused by movement, or friction from her clothes.
Eyedrops have to be applied throughout the day and night to keep her eyes from drying and becoming susceptible to scratches on their surface.
Humidity in the summer can cause her skin to blister and wearing layers in the winter can cause friction that also irritates her skin.
About 200 children are born a year with EB in the United States, according to the Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA).
Growing up, Chelsea couldn’t participate in extracurriculars, she tried playing the guitar but it was too harsh on her fingers.
Over time her family and friends have learned how to touch and hug her to prevent irritation and she said as an adult she’s able to make modifications to maintain an active lifestyle.
“I can’t do a lot of cardio but I can do low intensity workouts and lifting barbells has helped mobility in my arm,” she said.
“It’s trial and error of what I can and can’t do.”
October 25-31 is Epidermolysis Bullosa awareness week and Chelsea said she wants people to know that she and those with the disorder are normal and want to be seen as such.
“Really we are just like everyone else, we like to be acknowledged and not be stared at and we are comfortable, there’s just modifications needed,” 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.”
