A woman has opened up about her rare skin condition which renders her unable to lie or sit normally, and even the slightest bump can cause her skin to tear away from her body.
Becca Joy Stout, 24, from Brooklyn, New York suffers with a skin disease called Epidermolytic Hyperkeratosis, which affects only one in 300,000 people worldwide.
In an effort to raise awareness about her condition and support others facing similar challenges, Becca launched a TikTok profile under the username @becxjoy.
But since sharing her story online, she has faced a barrage of hurtful comments from trolls, who have called her "gross."
Epidermolytic Hyperkeratosis has caused Becca chronic pain, blisters, and skin tearing from everyday activities like sleeping and sitting.
To prevent her skin from ripping and blistering overnight, she must sleep on her stomach with her arms positioned at her sides.
Becca has even developed a limp due to open wounds on her leg, causing shooting pain as the stretched skin covers the injury.
Becca said: "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.
“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."
Becca has learned various techniques and treatments to manage her pain, including daily use of specialized lotions and scrubbing her skin.
Bathing involves moisturizing body washes and antiseptic washes to minimize bacteria, and once a week, she scrubs off excess skin with a pumice stone or stone-like pedicure brush while soaking in a bathtub.
“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.
The process takes about an hour, with Becca also relying on Tylenol for extreme pain, prescribed steroid creams for infections, and gauze wraps to bandage open wounds.
Becca's diagnosis was straightforward as her mother also suffered from the same hereditary condition.
The root cause of her skin disorder lies in a mutation in the Keratin 10 gene, resulting in skin cells that do not bond together properly and grow too quickly.
Living with this condition means that Becca's skin is extremely vulnerable to blisters and open wounds during normal activities that most people take for granted, such as sitting, dancing, exercising, walking, and even standing for too long.
Compression (from sitting, lying down, or having fabric pressing against her) causes her skin to blister in raised red patches that are sore and hot to the touch and often look like sunburn.
She also cannot use band-aids because the adhesive tears her skin off.
Unfortunately, her condition has significantly impacted her daily life.
Becca cannot engage in activities that involve prolonged sitting or twisting movements, making commuting via the subway or sitting in an office for hours incredibly painful.
“I may walk with a limp or not be able to twist or move my arm," she said.
"My skin may look sunburnt when it is actually blistered.
"I may have open wounds or visible gauze wraps.”,
Maintaining social connections has also proven challenging, as she struggles to keep up with her friends' lives.
Throughout her life, Becca has faced ridicule and discrimination, enduring classmates calling her names and physically harming her to witness the effects on her skin.
Despite the setbacks and emotional strain, Becca remains determined to live her life to the fullest.
She works full-time, pursues a graduate degree in Disability Studies, plays the piano, writes, and exercises.
