A New York woman has shared her daily struggles battling a rare skin-shedding condition.
Communications manager Becca Joy Stout, 24, from Brooklyn, is unable to lie or sit down for long periods without the risk of losing chunks of her skin.
She suffers rom epidermolytic hyperkeratosis, a one-in-300,000 condition that causes her skin to peel up to ten times faster than normal and become so dry she can’t move.
Ms Stout is forced to sleep on her stomach with her arms pinned to either side of her body in order to preserve her skin and prevent blistering overnight.
She has to moisturize her skin multiple times a day to prevent deadly infections forming in her gaping wounds.
Ms Stout is currently studying a Disability Studies master’s program at the City University of New York
Ms Stout has learned to manage her pain through different techniques and treatments, such as scrubbing her skin and using specialized lotions daily
It has limited her ability to do her favorite hobbies like playing piano, writing, and exercising – taking a toll on her mental wellbeing.
A mutation in the keratin 10 gene means her skin cells do not bond together like they should, making her skin is especially prone to blisters and open wounds.
She was diagnosed with the condition at birth because her mother also suffered from the same hereditary condition.
From a young age, Ms Stout remembered her classmates at school calling her names and hitting her with books in order to ‘see what happened’ when they did so.
As she has aged, Ms Stout has noticed that the attention from others was less physical and more intrusive as strangers would approach her and ask her personal questions about her skin, making her feel as though they were treating her as less-than-human.
This especially got worse after she started posting videos explaining her condition and what her life looks like every day because of it, to 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 being viewed by over 472,000 people.
However, since gaining her following, she has had to put up with trolls calling her ‘gross’ and dehumanizing her by asking intrusive questions like whether she can have sex when her skin can not tolerate friction.
This constant pain has put Ms Stout’s life on a stand-still since infancy, as she cannot do the average things that most people her age do as part of their day-to-day routines, such as getting the subway to work or to sit for hours in an office, as sitting for long periods of time causes her unbearable pain.
At times, the pain has been so unbearable, that Ms Stout has had to open blisters into wounds herself in order to stop the pain and start the healing process
She said: ‘In the simplest of terms, my skin cells do not bond together like they should, and they proliferate too quickly. The combination of these things mean that my skin is especially prone to blisters and open wounds.
‘Compression (like from sitting, lying down, or having fabric pressing against me) causes my skin to blister in raised red patches that are sore and hot to the touch and often look like sunburn.
‘Friction (like brushing up against or bumping into something) causes my skin to tear.
‘I do not get brush burns or rug burns, instead, the top layer(s) will pull away, which is especially the case if I already have a blister, but it still frequently happens, even when there is no blister in sight.’
She added: ‘I also cannot use band-aids because the adhesive tears my skin off. I also am extremely prone to skin infections, even when I do not have large open wounds because I get microtears in my skin, such as from shaving.’
Ms Stout has experienced chronic pain, blisters and open wounds susceptible to deadly infections from her skin tearing away from her body.
She cannot use band-aids because the adhesive will rip the skin off entirely.
At times, the pain has been so unbearable that Ms Stout has had to open blisters into wounds herself in order 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, such as her skin being much more prone to dying up, splitting and cracking in the winter, whereas her skin is much more prone to tears in the summer.
Ms Stout has learned to manage her pain through different techniques and treatments, such as scrubbing her skin and using specialized lotions daily.
She said: ‘On a multiple-times a day basis, I use lotions, 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 large tub that would last most people months will probably only last me a couple weeks if I am 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 off my excess skin with a pumice stone or stone-like pedicure brush.
‘This is done while soaking in a bathtub. I generally soak for about twenty minutes before beginning. It generally takes me about forty minutes to scrub my whole body, so all in all, this is about an hour-long process.
‘I take Tylenol when I am in extreme pain to help control the swelling and pain, and I use a handful of prescribed steroid creams when I have an infection. I also use gauze wraps to bandage open wounds when I have them.’
Ms Stout has found it difficult to keep-up with her peers her whole life, and says that although the pain of her condition is horrific, the struggles she deals with in relation to spending time with friends is the worst part of her condition.
She said that the worst thing about her condition is the social stigma surrounding it.
‘I am very frequently in pain. However, the inconveniences that accompany that pain are very annoying’, Ms Stout said.
‘For instance, when I am in pain, and it is hard to move or get dressed, getting myself to work via the subway or sitting in meetings can be especially painful.
‘The pain also limits my ability to hang out with friends since spending long hours dancing in a club or sitting and chatting can cause me pain.
‘Extreme pain can also make me miss out on activities I enjoy doing, such as working out.’
Although Ms Stout has experienced hardships with keeping up with her friends, she has also felt ostracized from society, due to other people’s reactions and comments.
‘I may walk with a limp or not be able to twist or move my arm. My skin may look sunburnt when it is actually blistered. I may have open wounds or visible gauze wraps,’ she said.
‘Although these are all common for me, I have found that it is not so much these things but rather other people’s reactions to them that is really uncomfortable and even painful.
‘These visible marks of disability encourage acquaintances and random strangers to approach me to give uninformed and unwelcome advice, ask some of the most intrusive questions, and make incredibly hurtful comments about my skin’s appearance.
‘Therefore, the worst things about living with my skin disorder occur as a result of my skin disorder but not necessarily as direct symptoms of my skin disorder, instead, they are caused by the changes in my ability to do the things I want to or need to do and by the interactions I have with other people as a result of my differences.’
Despite these incredibly tough set-backs Ms Stout has 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 setting, I am a current graduate student, and I also do a handful of other activities, like playing piano, writing, and exercising. From the outside looking in, my life does not look any different because of my skin disorder.’ she said.
‘However, based on experience and observations, I think I have a much different perspective than many other people and go about my life differently than other people without my disorder.’
She added: ‘I strategically plan my outfits based on everything I might do that day, such as what material I might end up sitting on, what I will be doing, how long I will be out, and what I need to carry with me (bags can also rub my skin raw at my shoulders).
‘I am more cautious to avoid bumping into other people. Especially in a busy city like New York, it can be very dangerous for me because anyone bumping into me or accidentally hitting their bags into me can cause my skin to tear off.
‘Despite how cautious I am, I also think I have a more carefree perspective when it comes to pain in general.
‘I am much more likely than most of the people I know to try a new workout activity or do something like horseback riding and martial arts that I know will result in pain. I know that I am going to feel pain for doing nothing, so I would rather feel that pain knowing that I did something enjoyable. Pain, for me, is inevitable, so I would prefer it on my own terms.’
Ms Stout has remained strong-willed and positive throughout her journey with her rare disease, even giving guest lectures about her skin condition in order to inform people about her struggles and perseverance. She is currently studying a Disability Studies master’s program at the City University of New York.