THIS young woman is covered in red-raw blisters, leaving her with “mittens” for hands – causing strangers to mistake her for an acid attack victim.
Myra Ali’s fingers have been fused together by scar tissue, leaving her with just the use of her left thumb and index finger.
The 29-year-old, from Solihul, West Midlands, suffers from a genetic complaint called epidermolysis bullosa (EB) – known as the ‘butterfly condition’ – where the skin is so delicate it tears all the time.
But the brave NHS interpreter is determined to live like any other young woman, wearing high-heels and fitted dresses, despite the pain.
She said: “I’ve almost lost the use of both my hands. It’s frustrating, as I have to ask people for help.
“I’m always shocked when people ask me if I’d been in an acid attack, but I just explain I haven’t been attacked but I have a burn-like skin condition.
“I am determined not to be one of those people who says ‘I’m in pain’ and just chooses to wear something comfortable. It’s not in my nature to be like that.
She added: “Even if my feet are blistered and painful, I will still bandage myself up and put my best high-heeled shoes on.
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“I have a choice – comfy shoes or heels, and I always choose the skyscrapers.”
When Myra was born on October 30, 1987, at Birmingham’s City Hospital, there was virtually no skin on her feet, prompting doctors to carry out a skin biopsy to confirm the epidermolysis bullosa (EB) diagnosis.
One of only 5,000 people in the UK living with the incurable condition, where any trauma or friction to the skin can cause painful blisters, Myra has always been determined not to let her EB hold her back.
This is despite her parents being warned that her fragile skin could mean she developed skin cancer in later life.
Go-getting Myra studied history at the University of Birmingham and now works part-time in the NHS, showing the world she can live a normal life.
The condition, which can be fatal, causes extreme burn-like blisters, particularly on Myra’s hands, face, feet and shoulders.
Even eating or brushing her teeth can cause extreme irritation in Myra’s throat and mouth.
She said: “The pain can be excruciating if that happens. I normally can’t eat for two weeks.
“That’s one of the major problems with this condition, it’s so painful and unpredictable. One day I am ok, but the next I wake up covered in blisters.”
When she was just 16, Myra’s hands started to close-up, creating a “mitten” effect, after her fingers became fused together by scar tissue.
“When I was younger my hands were much more open, but because of the scarring, and blisters they have closed, making my hands more like mittens,” she said.
“I was determined to keep on going with school, to get my A-levels and finally get to university.
“I’ve had five operations on my hands, to release my fingers, because I still want to do normal things.”
Frustratingly, any surgery to release the fingers from their mitten-like constraints is only temporary, as tissue starts to form again immediately.
But Myra is determined to be glamorous, and she still applies a full-face of make-up every day.
“I’m used to it now,” she smiled. “I don’t want to be wrapped up in cotton wool, I want to live a full life, like any other woman.
“I still want to feel feminine, sassy and to look good. People get very surprised when they see my hands and then look at my face.
“They ask me, ‘Does your sister do your make-up?’ When I tell them I do it myself – including foundation, mascara and eyeliner – they can’t believe it.
“The nurse who helps me get ready in the morning lays it all out, but I do a full application myself.”
Myra, who lives with her mum Naila, 50, says looking good makes her feel better, despite the excruciating pain.
“I would rather make more of an effort, even if I am feeling awful,” she said.
“Going that extra mile changes someone’s perception of you.
“When they see me in a body-con dress and high-heels, instantly their image of me changes from ‘she’s unwell’ to ‘she’s like any other woman’, and that’s exactly what I want.”
Myra had a non-surgical nose job, because she didn’t like its shape – but couldn’t go under the knife because of her skin’s fragility.
Dr Ayad of Harley Street performed the procedure, called the 3-point Rhino, putting Perfectha fillers into the top, bridge and tip of the nose to even out lumps and bumps.
Myra is determined to raise awareness of EB and to support others who are going through the same thing.
Myra speaks publicly for local hospitals and charities, including the Katie Piper Foundation, and uses her Instagram page @iammyraali to raise the condition’s profile.
She added: “As a Muslim, I especially want to reach out to my religious community and get people talking more openly about disability.”
Last month, The Sun exclusively reported on Gabrielius Misurenkovas, a four-year-old boy who is in constant agony because of his EB.
While Assya Shabir was given just 24 hours to live, and says she feels “completely blessed” to defy doctors and continue to live with the skin condition.
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