Rare syndrome has transformed the lives of women in hell, her skin is torn, like a paper napkin: a pain since the birth of my life

Редкий синдром превратил жизнь женщины в ад, ее кожа рвется, как бумажная салфетка: боль с самого рождения часть моей жизни

31-year-old woman from West Midlands (England) named Moira Ali was lucky to be born with a rare genetic disease that literally changed the life of women hell.

Moira suffers from the so-called Syndrome of a Butterfly, the scientific – epidermolysis bullosa.

Редкий синдром превратил жизнь женщины в ад, ее кожа рвется, как бумажная салфетка: боль с самого рождения часть моей жизни

This really is one of the most terrible diseases. Because people with the Syndrome of a Butterfly live with terrible chronic pain because the top layer of their skin is very fragile and even a slight brushing against clothing can lead to open wounds wet.

About 40% of those born with the Syndrome Butterfly children die in the first year of life, and much of the remainder do not survive to five years. The cure not.

This syndrome physicians were divided into three types: simple, border and dystrophic.

Moira last, the most severe and dangerous type.

Редкий синдром превратил жизнь женщины в ад, ее кожа рвется, как бумажная салфетка: боль с самого рождения часть моей жизни

As the woman said, her typical work day begins with taking paracetamol, then a shower, a toilet and after a long hour and a half ligation.

She has to bandage their hands and feet daily. Bandages to protect the skin from damage and each such procedure, the woman takes a half hour.

All this is also very painful, but with Moira there are no painkillers except paracetamol. As for Moira while maintaining the charge nurses who regularly visit and check on her health.

Редкий синдром превратил жизнь женщины в ад, ее кожа рвется, как бумажная салфетка: боль с самого рождения часть моей жизни

“The worst situation with those skin areas that come close to the bones. It is the knees, elbows, shoulders, feet. If they do not wrap, there always will be a wound. I live with the feeling of pain, which is a little drive off the pills but the pain since the birth of my life.

Many people with this syndrome are taking strong painkillers, but I don’t want to get hooked on pills because from them numerous other side effects.”

Skin poor woman’s fragile as a paper napkin and also easily torn. But the worst thing is that because of syndrome Moira lost fingers on both hands.

Her fingers seemed to have grown together in something like a mitten, due to the fact that interdigital skin folds was constantly torn and the IOC.

Редкий синдром превратил жизнь женщины в ад, ее кожа рвется, как бумажная салфетка: боль с самого рождения часть моей жизни

Moira said that when she was little, had multiple surgeries on his arms and face, including the nose, or it simply would not have the nose.

“As a child, I was operated on of hands to separate from the total accreted mass of the thumb, and to build a “mitten”. And every few years I do eyelid surgery. I also attend special beauty treatments in the office of a plastic surgeon”.

Редкий синдром превратил жизнь женщины в ад, ее кожа рвется, как бумажная салфетка: боль с самого рождения часть моей жизни

With all of this Moira is not sitting at home on disability, and works as a translator at women’s hospital and Birmingham children’s hospital NHS Trust. Additionally, Moira speaks with motivational lectures.

We will remind, the terrible pain would not let the girl live a normal life, but one decision changed everything.

As reported by the portal “Znayu” 24-year-old Gemma birch has experienced a severe infection from a stray cat.

Also “Znayu” I wrote, allergic burns turned her life into a living hell. The fact that she survived is a real miracle.

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