By Nathalie Bonney @nathaliebonney
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Videographer / director: Marcus Hessenberg
Producer: Nathalie Bonney
Editor: Sonia Estal / Ruby Coote
Myra Ali, from Solihull, was born with Dystrophic Epidermolysis Bullosa, a rare genetic skin condition that causes her skin to break and tear as easily as a piece of paper.
The 31-year-old told Barcroft TV: “My skin is really fragile and it can blister and tear quite easily.
“The bony areas of my body are worse affected - like my shoulders, my arms, my hands, knees and feet, and they’re always bandaged.”
Admitting she endures pain on a daily basis, astonishingly Myra takes nothing more than paracetamol.
She said: “I would say I am in pain most of the day. Whenever I take pain killers it helps ease it, but the pain doesn’t really ever go just because of the nature of the condition and there are many people who take higher strength pain killers and it does help them, but for me personally I would rather not have the side effects that are associated with higher pain killers.”
When she was younger Myra had full use of her hands but over time scar tissue between her fingers has fused them together, as Myra describes, contracting and becoming ‘mitten-like”.
She said: “I have hand surgery every year or ever couple of years and the surgery is quite long it’s about five hours, my first-hand surgery was eight hours because they opened the whole hand but now my surgeon releases the thumb or a few fingers and that helps me get some dexterity back.
“I have eyelid surgery every couple of years so my eyes close better because the eyelids are scarred and at night the surface of the eye is exposed so I have skin grafting on the eyelids.”
In spite of the many medical surgeries she has had, Myra has also had several cosmetic procedures, including a non-surgical nose job and fillers.
She said: “There is no extra risk with having EB and cosmetic surgery. The only risk there is, if you are in the wrong hands, your skin could blister.
“My skin has never reacted to any products or procedures luckily so I have been fine so far.”
Travelling to Qosmetic Clinic in Bicester, under the supervision of Dr Ayad Harb, a plastic surgeon who has worked with burn victims and who Myra first met at a skin clinic, Myra says the cosmetic procedures have been a big boost for her self-esteem.
She said: “It’s definitely enhanced my confidence and also it has made me feel like my EB doesn’t stop me.
“Normally I have procedures done which are like hand surgery or eye surgery, which are done in an NHS hospital but when I come here, I am not coming here for my EB, I am coming for myself.
“I do want people to see that someone with a difficult condition is perfectly capable of living a normal life and they are not defined by their illness.”
Myra works as a translator for the Birmingham Women’s and Children’s Hospital NHS Trust.
She said: “I work as a translator for pregnant women; I speak Urdu and Punjabi and I help women from that region who can’t speak English, I help them in their appointments and through their pregnancy.
“It’s really nice having a job where I am helping someone and my condition doesn’t matter, and the patient needs me and they require my help.”
Before she can even start her working day, the 31-year-old has to get her limbs carefully dressed. Relying on a roster of nurses that come to her home, as soon as some wounds start to heal, new blisters and breakages appear.
Myra said: “I have a few different nurses who come on different days but they all know about my condition and what is involved with a dressing change.
“I get to know the nurses and they become like friends.
“I wake up, I have pain killers, I have a shower and I have a dressing change and I will always be slightly rushed because the dressing change takes about an hour and half and then I get to work.”
Alongside her day job Myra enjoys motivational speaking and has spoken for EB charity DEBRA at gala dinners and hospitals and about her condition. She also uses her Instagram account to inspire others and prove that having a skin condition doesn’t prevent her from celebrating her beauty.
“There are many people all around the world who contact me on Instagram, either they have health conditions or they’re going through a bad time;, they tell me that they have gained a lot of strength from seeing what I do,” she said.
“I have a very difficult condition but so do others, and some people have even worse conditions than me and I just want to get on with life and I have had this condition for 31 years and I went to a really good university and I graduated and Instagram about my condition all over the world and I am showing that in difficult position you can have a good life.”