A WOMAN who suffers from a rare condition known as ‘butterfly skin’ has spoken about how she copes with pain similar to second degree burns.
Myra Ali, from Solihull, was born with dystrophic epidermolysis bullosa (EB), which causes her skin to break and tears easily.
She endures pain on a daily basis and is always covered in bandages, taking an hour and a half to put on every morning with help from nurses and family.
She has taken to instagram to educate others about her condition and how she deals with everyday life.
She said: “It started when I took a picture of myself and I posted it online, people started liking it and wanted to know more.
“I wanted to promote positivity to people rather than the doom and gloom that goes with a condition.
“I show my everyday life and even when I go to hospital appointments discuss what has been said and what the next steps are.
“People following it have got in touch telling me about their stories and hardship.
“It feels great as I’m raising awareness and getting people talking about skin conditions.”
Over the years Myra, who works as a translator at University Hospital Birmingham Trust, has gone through major surgery, including on her eyelids, lasting five hours, almost every year since she was a child, and several cosmetic procedures.
The 31-year-old told The Observer she lost the use of her hands after her fingers were fused together by scar tissue from the skin condition.
When Myra was born at Birmingham’s City Hospital, there was virtually no skin on her feet, prompting doctors to carry out a skin biopsy to confirm the EB diagnosis.
One of 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 when she was diagnosed that her fragile skin meant she could develop skin cancer in later life.
Over the years she has given a series of speeches about her condition to raise funds for DEBRA – a charity which carries out research and supports those living with the condition.
She has met members of the royal family on occasions where she was speaking and has interviewed two-star Michelin chef Michel Roux Jr.
She said: “My speeches are all about raising awareness and last year I spoke at the Savoy in London at a charity dinner and the event raised £100,000 for DEBRA – that felt pretty amazing to be a part of that evening knowing that I have helped in the fight against skin conditions.”
