New York woman, 24, has scaling disorder that causes her skin to shed 10 times faster

A New York woman has shared her daily struggle with a rare skin rash.

Communications manager Becca Joy Stout, 24, of Brooklyn, can’t lie or sit for long without risking shedding chunks of her skin.

She suffers from epidermolytic hyperkeratosis, a condition that affects one in 300,000 and causes her skin to peel up to ten times faster than normal and become so dry that she cannot move.

Mrs. Stout is forced to sleep on her stomach with her arms pinned down on either side of her body to protect her skin and prevent blistering during the night.

She has to moisturize her skin several times a day to avoid deadly infections in her gaping wounds.

Ms. Stout has learned to manage her pain through various techniques and treatments, such as scrubbing her skin and using specialized lotions daily

It has limited her ability to pursue her favorite hobbies, such as playing the piano, writing, and sports, undermining her mental well-being.

Due to a mutation in the keratin 10 gene, her skin cells don’t adhere as they should, making her skin particularly prone to blisters and open wounds.

She was diagnosed at birth because her mother also suffered from the same hereditary condition.

From an early age, Mrs. Stout remembered her classmates at school berating her and hitting her with books to “see what happened” when they did.

As she got older, Mrs. Stout noticed that attention from others was less physical and intrusive, as strangers approached her and asked her personal questions about her skin, making her feel like they were treating her as less than human.

This got especially worse after she started posting videos explaining her condition and what her life is like every day because of it, on TikTok, under her account name @becxjoy.

To raise awareness for her condition and help others in a similar situation, Ms. Stout launched a TikTok profile with over 21,000 followers and her most popular video was viewed by over 472,000 people.

However, since gaining a following, she’s had to put up with trolls calling her “gross” and dehumanizing her by asking intrusive questions like if she can have sex if her skin can’t take rubbing.

This constant pain has brought Mrs. Stout’s life to a standstill since childhood, as she is unable to do the average things that most people her age do as part of their daily routine, such as taking the subway to work or sitting down. hours in the office, because sitting for long periods gives her excruciating pain.

Sometimes the pain was so excruciating that Mrs. Stout had to cut blisters in wounds herself to stop the pain and start the healing process

She said, “In the simplest terms, my skin cells aren’t bonding together as they should, and they’re multiplying too quickly.” The combination of these things makes my skin particularly prone to blisters and open wounds.

“Compression (such as sitting, lying down, or pressing fabric against me) causes my skin to blister in raised red patches that feel painful and hot, and often look like a sunburn.

“Friction (like bumping or bumping into something) causes my skin to tear.

‘I don’t get burns from brushes or carpets, but the top layer(s) peel off, which is especially the case if I already have a blister, but it still happens often even when no blister is visible. ‘

She added, “I also can’t use band-aids because the glue rips my skin off.” I am also extremely prone to skin infections, even if I don’t have large open wounds because I get microtears in my skin, for example from shaving.’

Mrs. Stout suffers from chronic pain, blisters and open wounds that are prone to deadly infections as her skin tears away from her body.

She can’t use band-aids because the glue completely rips the skin off.

Sometimes the pain was so excruciating that Mrs. Stout had to open blisters in wounds herself to stop the pain and start the healing process.

After peeling the skin, the wound will be extremely sensitive, painful, and weepy for a day or two.

During that time she wraps it in gauze and steroid creams or Neosporin and changes the bandages regularly.

Different seasons even affect her skin differently, for example her skin is much more prone to dying, splitting and cracking in the winter, while her skin is much more prone to tears in the summer.

Ms. Stout has learned to manage her pain through various techniques and treatments, such as scrubbing her skin and using specialized lotions on a daily basis.

She said, “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.

“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.”

She added, “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 pedicure brush.”

“This happens while soaking in a bathtub. I usually let it soak for about twenty minutes before starting. It generally takes me about forty minutes to exfoliate my entire body, so all told, this is about an hour process.

“I take Tylenol when I’m in extreme pain to control the swelling and pain, and I use a handful of prescription steroid creams when I have an infection.” I also use gauze pads to bandage open wounds if I have them.’

Ms. Stout has had a hard time keeping up with her peers throughout her life, saying that while the pain of her condition is terrible, the struggle she faces in relation to spending time with friends is the worst part of her condition.

She said the worst thing about her condition is the social stigma surrounding it.

“I am in pain very often. However, the discomfort associated with that pain is very annoying,’ says Mrs Stout.

“For example, if I’m in pain and it’s hard to move or get dressed, getting myself to work on the subway or sitting in meetings can be extra painful.

“The pain also limits my ability to socialize with friends, as spending hours dancing in a club or sitting chatting can hurt me.

“Extreme pain can also cause me to miss out on activities I enjoy doing, such as exercising.”

While Ms. Stout has struggled to keep up with her friends, she also felt left out of society due to other people’s reactions and comments.

“I may be limping or unable to turn or move my arm. My skin can look sunburned when it actually has blisters. I may have open wounds or visible bandages,” she said.

“While this is all normal to me, I’ve found that it’s not so much these things, but rather other people’s reactions to them that are really uncomfortable and even painful.

These visible signs of disability encourage acquaintances and random strangers to approach me to offer uninformed and unwelcome advice, ask some of the most intrusive questions, and make incredibly hurtful comments about the appearance of my skin.

“That’s why the worst things about living with my skin condition occur as a result of my skin condition, but not necessarily as direct symptoms of my skin condition, instead they are caused by the changes in my ability to do the things I want or to do and the interactions I have with other people as a result of my differences.’

Despite these incredibly tough adversities that Mrs. Stout endured throughout her life, she remains strong and determined to make the most of her life, even though her days are filled with pain and unwanted attention.

‘I work full-time in a hybrid office environment, am currently a graduate student and also do a handful of other activities, such as playing the piano, writing and sports. Looking in from the outside, my life doesn’t look any different because of my skin condition.’ she said.

“However, based on experience and observations, I think I have a very different perspective than many other people and live my life differently than other people without my disorder.”

She added: “I strategically plan my outfits based on everything I could be doing that day, like what material I might be sitting on, what I’m going to be doing, how long I’ll be gone and what I need to carry with me.” . (pockets can also rub my skin raw on my shoulders).

“I’m more careful not to bump into other people. Especially in a busy city like New York, it can be very dangerous for me, because if someone bumps into me or accidentally bumps into me with their bag, my skin can rip off.

“As careful as I am, I also think I have a more carefree perspective when it comes to pain in general.

“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. 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.”

Ms. Stout has remained determined and positive throughout her journey with her rare disease and has even guest lectured on her skin condition to educate people about her struggles and perseverance. She is currently studying a master’s degree in Disability Studies at the City University of New York.