A New Yorker shared her daily struggle with a rare rash.
Communications manager Becca Joy Stout (24) from Brooklyn can’t lie down or sit for long periods of time without running the risk of shedding patches of skin.
She suffers from epidermolytic hyperkeratosis, a condition that affects one in 300,000 people and causes her skin to peel up to 10 times faster than normal and become so dry that she can’t move.
Mrs. Stout is forced to sleep on her stomach with her arms pinned to either side of her body to protect her skin and prevent blisters from forming during the night.
She has to cream her skin several times a day to avoid deadly infections in her gaping wounds.
Ms. Stout is currently pursuing a master’s degree in disability studies at the City University of New York
Ms. Stout learned to manage her pain using various techniques and treatments such as: B. scrubbing their skin and using special lotions every day
This limited their ability to pursue their favorite hobbies, such as playing the piano, writing and sports, and eroded their mental well-being.
Due to a mutation in the keratin 10 gene, their skin cells do not stick together as they should, making their skin especially susceptible to blisters and open sores.
She was diagnosed at birth because her mother also had the same hereditary condition.
From childhood Mrs. Stout remembers that her classmates would scold her and hit her with books to see what happened when they did.
As she grew older, Mrs. Stout found that attention from others was less physical and intrusive as strangers would approach her and ask personal questions about her skin, making her feel less than human.
It got particularly bad after she started posting videos explaining her condition and daily life on TikTok under her account name @becxjoy.
To raise awareness of 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 has been viewed by over 472,000 people.
Since gaining a following, however, she’s had to endure trolls calling her “gross” and dehumanizing her by asking pushy questions, like whether she can have sex when her skin can’t handle the rubbing.
This constant pain made mrs. Stout’s life has been put on hold since she was a child, 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 U – taking the train to work or sitting off. Hours in the office because long periods of sitting cause her excruciating pain.
Sometimes the pain was so terrible that Mrs Stout herself had to cut blisters into wounds to stop the pain and start the healing process
She said: “To put it simply, my skin cells are not connecting as they should and they are multiplying too quickly.” The combination of these things makes my skin especially prone to blisters and open sores.
“Compression (eg by sitting, lying or cloth pressing against me) causes my skin to blister into raised red spots that are painful and hot to the touch and often look like sunburn.
“Friction (like bumping or bumping something) causes my skin to tear.
“I don’t get burns from brushes or mats, but the top layer(s) will peel off, which is especially the case when I already have a blister, but it often happens even when no blister is visible. ‘
She added: “I can’t use plasters either because the glue tears my skin off.” I’m also extremely prone to skin infections, even though I don’t have big open wounds, because I get micro tears in my skin, like from shaving.”
Mrs. Stout suffers from chronic pain, blisters and open sores prone to fatal infections when her skin tears away from her body.
She can’t use plasters because the glue completely tears the skin off.
Sometimes the pain was so excruciating that Mrs. Stout herself had to open blisters in wounds to stop the pain and start the healing process.
After the skin is peeled, the wound will be extremely tender, painful, and oozing for a day or two.
During this time, she wraps it in gauze and steroid cream or Neosporin and changes the bandages frequently.
Different seasons even affect their skin differently, for example, in winter their skin is much more likely to die, crack and crack, while in summer their skin is much more prone to tears.
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Ms. Stout learned to manage her pain using various techniques and treatments such as: B. scrubbing their skin and using special lotions every day.
She said: “I use lotions several times a day, heavier in the winter, lighter in the summer and a combination in the autumn and spring months.
“I go through lotions so quickly that a big tub that would last most people months can only last a few weeks if I’m lucky.”
She added: “I use moisturizing shower gels and an antiseptic cleanser in the shower every day to get rid of as much bacteria as possible, and once a week I scrub off excess skin with a pumice or stone pedicure brush.”
“That’s what happens when you bathe in the bathtub. I usually let it sit for about twenty minutes before I start. It usually takes me about forty minutes to exfoliate my entire body, so about an hour in total.
“I take Tylenol when I’m in extreme pain to control the swelling and pain, and I use a handful of prescription steroids when I have an infection.” I also use gauze pads to cover up open sores if I have any.
Ms Stout has struggled throughout her life to keep up with her peers and said that while the pain of her condition is excruciating, the struggle she faces to spend time with friends is the worst part of her condition is.
She said the worst part of her condition is the social stigma that surrounds her.
“I am in pain very often. However, the discomfort associated with this pain is very annoying,” says Ms Stout.
“For example, if I’m in pain and it’s hard to move or get dressed, it can be especially painful to take the subway to work or sit in meetings.
“The pain also limits my ability to socialize with friends, because it can hurt me to dance for hours in a club or sit and talk.
“Extreme pain can also cause me to miss activities that I enjoy doing, such as exercise.”
While Ms. Stout struggled to keep up with her friends, other people’s reactions and comments also made her feel left out of society.
“I might walk with a limp or not be able to turn or move my arm. My skin can look sunburned when it actually has blisters. I might have open wounds or visible bandages,” she said.
“While this is all normal to me, I have found that it is not so much those things as other people’s reactions to them that are really uncomfortable and even painful.
answer now
These visible signs of disability encourage acquaintances and random strangers alike to turn to me for uninformed and unwelcome advice, ask some of the most intrusive questions, and make incredibly hurtful comments about the appearance of my skin.
“Therefore, the worst things about living with my skin condition occur because of my skin condition, but not necessarily as direct symptoms of my skin condition, but rather are caused by the changes in my ability to do the things I want or can do. do. do and do.” Interactions I have with other people because of my differences.’
Despite this incredibly hard adversity that Mrs. Having endured adversity throughout her life, she remains strong and determined to make the most of her life, even when 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 some other activities such as playing the piano, writing and exercising. From the outside, my life doesn’t look different because of my skin type.” she said.
“However, based on experience and observation, 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 plan my outfits strategically based on everything I might be doing that day, like what material I might be sitting on, what I’m going to be doing, how long I’m going to be away and what I’m going to do carry with me.” . (Bags can also rub my skin sorely on my shoulders).
“I’m more careful not to bump into other people. Especially in a busy city like New York, this can be very dangerous for me because if someone bumps into me or accidentally bumps their pocket, my skin can tear off.
“As cautious as I am, I also think I’m more light-hearted about pain in general.
“I’m much more likely than most people I know to try a new sport or do something like horse riding and martial arts that I know causes pain. I know I will feel pain for doing nothing, so I would rather feel that pain because I know I have done something good. 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, even giving guest lectures about her skin condition to educate people about her struggle and perseverance. She is currently pursuing a master’s degree in disability studies at the City University of New York.
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Crystal Leahy is an author and health journalist who writes for The Fashion Vibes. With a background in health and wellness, Crystal has a passion for helping people live their best lives through healthy habits and lifestyles.
