Health
March 15, 2023 | 11:36 am
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 braves vicious trolls to speak out about a rare medical condition that causes her skin to shed skin 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 susceptible to deadly infections. Friction from human contact can also cause the communications manager excruciating pain, but comments from strangers are especially painful.
“I have noticed that it is not that much [my symptoms] but rather other people’s reactions to it that are really uncomfortable and even hurtful,” Stout told Media Drum, saying she was called “gross” and “disgusting.”
Others have asked insensitive and intrusive questions, questioning Stout about how she has sex when her skin can’t handle rubbing.
But the “dehumanizing” questions and comments haven’t stopped Stout from sharing epidermolytic hyperkeratosis stories on TikTok, where she has amassed more than 21,000 followers.
“My skin condition occurs as a mutation in the keratin 1 or keratin 10 gene,” explains the Brooklynite. “In my case, it was a mutation on the Keratin 10 gene.”
“In the simplest terms, my skin cells don’t stick together like they should, and they multiply too quickly,” she said. “The combination of these things means my skin is particularly prone to blisters and open wounds.”
Compression from sitting or lying down can cause Stout’s skin to blister in raised red patches that are painful and warm to the touch. Meanwhile, friction from brushing or bumping into something causes her skin to tear.
“When I’m in pain. . . it’s hard to get around or get dressed or get myself to work via the subway,” Stout stated. “The pain also limits my ability to socialize with friends, as dancing for hours at a club or sitting and chatting can cause discomfort.”
A rebellious Stout has learned to manage her pain through various techniques and treatments, such as scrubbing her skin and using specialized lotions.
“I use lotions several times a day, thicker ones in the winter, lighter ones in the summer, and a combination in the fall and spring months,” she revealed. “I go through lotions so quickly that a big bath that would last most people for months will probably only last a few weeks if I’m lucky.”
“Every day in the shower I use moisturizing body washes and an antiseptic wash to get rid of as much bacteria as possible, and once a week I scrub away my excess skin with a pumice stone or stone-like pedicure brush,” she said.
Stout is now pursuing a master’s degree in Disability Studies at the City University of New York and says she’s not afraid to try new things — even if they cause a lot of pain.
“I’m much more likely than most people I know to try a new exercise activity or do something like horseback riding and martial arts that I know will cause pain,” she stated.
“I know I’m going to feel pain for not doing anything, so I’d rather feel that pain knowing I did something nice. Pain is inevitable for me, so I prefer it on my own terms.
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