A woman with skin “like the wings of a butterfly” spoke candidly about her fatal illness (photo)

A woman has described how the fatal, incurable disease leaves her skin blistered and feeling “as fragile as a butterfly’s wings”.

About it writes The Sun.

Assya Shabir from Birmingham, UK, was born with epidermolysis bullosa nodosa, a painful genetic disorder that affects the skin.

The 36-year-old woman often has to deal with blisters, open wounds, skin loss, friction and irritation, which seriously impacts her daily life.

She says the pus-filled blisters stick to her bed sheets and pajamas every day when she wakes up.

She is often “judged or ignored” by strangers and is in and out of hospital for home treatment.

Assya said: “My skin is as fragile as the wings of a butterfly. The slightest pressure or even a blow can cause blisters and scratches on my skin. “It’s not just an external phenomenon – I get blisters in my esophagus, eyes, mouth, gums and other areas. “It affects me not only physically, but also mentally and emotionally. It’s hard to find true friendships and relationships. Some people won’t acknowledge me—they’ll judge me or ignore me.”

Epidermolysis nodosa is a fatal type of epidermolysis bullosa, a group of skin diseases. Research shows that the number of people born with these conditions has decreased over the past 19 years. Life expectancy for children with the fatal disease also improved slightly due to improved newborn care, the researchers said.

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Treatment contains dressings, creams and ointments to prevent life-threatening infections when the blisters turn into open sores. Some blisters must be pricked with a hypodermic needle to stop them spreading, and pain medications may be prescribed.

Assya says that because of this condition, she unfortunately has to endure people staring at her or making faces at her in public.

She said: “Most of the time I try not to react. But when I’m having a flare-up and I’m already feeling worse because the pain is unbearable, their looks hit hard and make me feel like crap. I’m sure you can imagine the comments I get.” . Ironically, this comes more from adults than from children – yes, of course, children comment on it, but they do not understand why I look different. One of the worst things I have come face to face with is “you looks like Freddy Krueger” and “your mom should have had an abortion.” I’ve also had cases where people push themselves or their children away from me. When I’m in the hospital, I’m sad because I think this might be the last time when I see my family, my nieces, nephew and my friends.”

Assia says four of her aunts tragically also suffered from the disease and died. “We’re not sure what type they had, but from what my mother remembers, they had the same wounds and blisters as I did. So, most likely, they did have epidermolysis bullosa nodosa. They all died in between three and 12 weeks of age.”

Last year, Assya was hospitalized with sepsis and feared for her life. But she says her faith and family help her get through difficult times.

To attract public attention, Assya shares her daily life on Instagram.

Recall that a two-year-old girl died as a result of a rare pigeon virus. She is the fifth person to die from the disease.

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