Health
March 15, 2023 | 11:36
Becca Joy Stout suffers from epidermolytic hyperkeratosis, a skin condition that affects only one in 300,000 people worldwide.
She has thick skin.
A Brooklyn woman defies cruel trolls to talk about a rare condition that causes her skin to peel off up to 10 times faster than normal.
Becca Joy Stout, 24, suffers from epidermolytic hyperkeratosis, a skin condition that affects only one in 300,000 people worldwide.
Since birth, Stout’s skin has constantly peeled and blistered, leaving her vulnerable to life-threatening infections. The friction of human contact can also leave the communications manager in unbearable pain – but remarks from strangers are more painful than anything.
“I found that it’s not so much [my symptoms] but rather other people’s reactions to them that are really uncomfortable and even painful,” Stout told Media Drum, saying she had been called “rude” and “disgusting.”
Others asked insensitive and invasive questions, asking Stout about how she has sex if her skin can’t take any friction.
But the “dehumanizing” questions and comments haven’t stopped Stout from sharing stories about epidermolytic hyperkeratosis on TikTok, where she’s racked up more than 21,000 followers.
“My skin disorder occurs as either a keratin 1 or keratin 10 gene mutation,” the Brooklynite explained. “In my case, it was a mutation on the keratin 10 gene.”
“Simply put, my skin cells aren’t binding the way they should and they’re proliferating too quickly,” she said. “The combination of these things means my skin is particularly prone to blisters and open sores.”
Compression from sitting or lying down can cause Stout’s skin to blister into raised red patches that are painful and hot to the touch. Meanwhile, the friction from brushing or bumping into something causes her to tear her skin.
“When I’m in pain . . . it’s hard to get around or get dressed or get to work via the subway,” Stout said. “Pain also limits my ability to spend time with friends, because spending long hours dancing in a club or chatting can cause discomfort.”
A defiant Stout has learned to manage her pain through different techniques and treatments, such as rubbing her skin and using specialized lotions.
“Several times a day I use lotions, thicker ones in the winter, lighter ones in the summer, and a combination in the fall and spring,” she revealed. “I go through lotions so quickly that a large jar that would last most months will probably only last me a few weeks if I’m lucky.”
“Daily in the shower I use moisturizing body washes and an antiseptic cleanser to remove as much bacteria as possible, and once a week I scrub my excess skin with a pumice stone or similar pedicure brush. one stone away,” she said. said.
Stout is now enrolled in a master’s program in disability studies at the City University of New York and says she’s not afraid to try new things, even if they cause considerable pain.
“I’m much more likely than most people I know to try a new workout activity or do something like horseback riding and martial arts that I know will cause pain,” a- she declared.
“I know I’m going to feel pain from doing nothing, so I’d rather feel that pain knowing I’ve done something nice. Pain, to me, is unavoidable, so I’d rather feel it than my own. terms.
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