By Tanita Matthews
THIS WOMAN wakes up every morning STUCK TO HER BED because of a skin condition that causes painful BLISTERS over every inch of her body – including in her EYES, EARS AND MOUTH.
Acorn’s Children Hospital ambassador, Assya Shabir (32) from Birmingham, was diagnosed with Junctional Epidermolysis Bullosa (JEB) when she was born in August 1987, the rarest and most severe type of Epidermolysis Bullosa.
The condition, for which there is no cure, leaves her skin and internal organs very fragile, even the slightest movement causes blisters to appear on the body. As well as the blisters and incredible pain Assya suffers, she is also susceptible to infections due to a lowered immune system as a result of her condition.
About half of those who are diagnosed with JEB do not survive past the first year of their life. For those that do surpass the first year, many are not expected to live past five years old. Only a few children with JEB survive into adulthood.
Assya’s diagnosis at birth was that she would be dead within 24 hours but year-on-year she has proven doctors wrong. On her next birthday she will be 33.
“When I was first born, they told my parents that I only had 24 hours to live and luckily my mum saved me,” Assya said.
“Those little pink sponges, she used those and dipped one into her breast milk and squeezed some milk into my mouth. That helped raise my blood pressure and helped me stay alive.
“Then they gave me a month to a year possibly and then after that it was maybe two to five years and then when I turned ten years-old they stopped counting because they were like, ‘there’s just no point she’s passed the expected age limit’.”
“I get blisters internally and externally from head to toe. There isn’t a millimetre on my body where I’ve not blistered. I get blisters in my mouth, eyes, ears and on internal organs like my heart muscles.
“On a daily basis I struggle with everything that I do from getting up, getting ready, eating; it affects the inside of my organs and mouth.”
Assya’s daily life consists of ensuring her skin is clean and bandaged, a routine which can take up to six-hours-a-day to complete.
But despite the mammoth task of caring for her skin, Assya never let it stop her from accomplishing numerous goals including completing a foundation degree at university, meeting royalty and a skydive.
“In the morning I wake up with loads of blisters, or stuck to the bed, or my pyjamas will be stuck to my blisters, so it will take me longer to get up. I have to remove the dressing and apply a dressing and get out of bed, have a wash,” she said.
“Depending on how bad my skin is on that day, sometimes I’m okay but then an hour or so later my skin is worse. Blisters can flare up at any point.
“I have to change my dressings on my feet every day – sometimes twice a day so it’s more comfortable, and then so I’m able to either walk or drive.
“I have a bath every other day or two days to help with everything else. I don’t have showers because showers affect my skin more because of the pressure of the shower, especially on my feet because water falling from that distance from the top to the bottom creates blisters.”
“I passed my driving test. A lot of people thought I’d never drive but I proved them wrong. I had started driving at seventeen but kept stopping my lessons due to my health, however I finally passed at twenty-five years old.
“I faced my biggest fear of heights head on and decided to do a sky dive for charity, Acorns Children’s Hospice and Debra back in April 2017. It was the best experience ever, the adrenaline rush and the fact that everyone doubting that I wouldn’t go through with it, pushed me to do it.
“Most recently, in 2018, I had the honour of meeting HRH Prince William at Acorns Children’s Hospice. I was so honoured to give Prince William a tour of Acorns children’s hospice Birmingham thirty years after his late mother Princess Diana opened the Hospice back in 1988. “
Assya’s permanently blistered skin means that every day she is met with judgemental stares from onlookers. But she is determined to carry on living her life to its fullest, raising awareness of her condition and travelling.
“I really want to do bigger things and raise more awareness for my skin and not just for my skin, but for Acorn’s and raise more awareness in the community.
“Unfortunately having a condition or some kind of thing that’s different from other people in the Asian community is a taboo, and I just want people to break out of the fact that just because you’ve got a condition doesn’t mean you can’t do the normal human things that a female will do like work, get married, have a family, peruse dreams.
“I really want to travel more this year, hopefully. I want to see the world a bit more, even if it’s just the UK – go out and about and live life and make more time for family and friends and hopefully make more friends.”
You can follow Assya’s journey at: https://www.instagram.com/ebqueen87/