Moira Ali, 31, from the West Midlands (England) was born with the rare Butterfly Syndrome, aka epidermolysis bullosa, which is often called one of the worst diseases.
People with Butterfly Syndrome live with a constant feeling of severe pain because the top layer of their skin is very fragile and even slight friction (for example, against clothing) leads to peeling off pieces of skin and open wet wounds.
The syndrome is divided into three types: simple, borderline and dystrophic, where the latter is the most severe.
Moira has that type.
Her morning begins with the bandaging of her arms and legs, wrapping them in fresh bandages. Bandages are needed to protect the skin from damage, and each such procedure takes a woman an hour and a half. All of this is also very painful, but Moira has no pain relievers other than paracetamol.
Moira's skin is as fragile as a tissue paper and also tears easily. But the worst thing is that because of this illness the woman lost her fingers on both hands. More precisely, her fingers seemed to grow together into something like a mitten due to the fact that the interdigital skin folds were constantly torn and wet.
When Moira was little, she underwent several surgeries on her hands and face, including on her nose, otherwise now she simply would not have a nose.
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With all this, Moira does not stay at home on disability benefits, but works as an interpreter at the Birmingham Women's Hospital and the NHS Trust Children's Clinic. In addition, Moira gives motivating lectures.
According to Moira, her normal working day begins with taking paracetamol, then shower and toilet, and then a long dressing for an hour and a half. At the same time, Moira's condition is monitored by assigned nurses who regularly visit her and check her health.
About 40% of babies born with Butterfly Syndrome die in the first year of life, and most of the rest do not live to be five. There is no cure for this disease.