This woman suffers from rare disease that causes her skin to peel off

Published on March 16, 2023 at 5:47 PM by Sharleen McAleavy

This young woman suffers from a particularly rare genetic disease that causes her skin to peel off, similarly to a reaction to sunburns.

This woman suffers from rare and painful disease that cause her skin to constantly peel off

If you are among those who have a particularly sensitive skin under the sun, you have surely already experienced this typical episode of the summer when you stay a little too long in the sun, hoping to tan. You get sunburned, you quickly become salmon-colored and you peel. This is a normal process for the body to shed dead skin cells.

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Losing her skin

The disease we are going to talk about now is somewhat similar to this well-known phenomenon after too much exposure to the sun, but much more serious. We explain it all to you.

To understand this condition, a New Yorker shares with us her daily fight against this very rare skin disease on TikTok. If we can sometimes find the worst side of people on social networks, this girl is proof that we can also learn a lot and raise awareness on topics unknown to the general public.

Becca Joy Stout, one in 300,000

Becca Joy Stout is 24 years old. As a communications manager in Brooklyn, New York, you could think her life is pretty easy? And yet Becca is unable to lie down or sit for too long. Why? If she sits down, she risks losing her skin...

This disease, called epidermolytic hyperkeratosis, is a very rare condition that affects only one in 300,000 people. According to current studies, it is estimated that the skin of people who suffer from this disease, peels about ten times faster than other people's. And that's not all. Once this skin is lost, it becomes so dry that it is almost impossible for sufferers to move.

@becxjoy
She’d be so proud #innerchild #skindisorder #skindisease
♬ Falling Apart (Sped up Version) - Michael Schulte

The constraints of the disease

Becca is forced to sleep on her stomach with her arms tied on either side of her body to preserve her skin, and to prevent blisters from forming during the night. As you might expect, there are many constraints that come with this disease during daytime as well.

To prevent too much skin from peeling, Becca has to moisturize her body a lot to prevent large wounds from forming. As she explains on her TikTok account, she can no longer play the piano or exercise.

@becxjoy
Replying to @serotonintime this is what I mean #skindisorder #skindisease #disability #disabled
♬ original sound - beccajoy

This disease is actually linked to a mutation in the keratin gene that prevents its skin cells from assembling properly. The body thus gets rid of this badly formed skin. A genetic condition that Becca unfortunately inherited from her mother who also suffered from it.

This article has been translated from Gentside FR.

Sources used:

TikTok