Every morning Assya Shabir wakes up in unimaginable pain.
This is because of condition she has called Junctional Epidermolysis Bullosa (JEB), which means that the movements she makes throughout the night cause her skin to blister and stick to her bed or pyjamas.
‘I have to remove the dressing and apply a dressing and get out of bed, have a wash,’ 32-year-old Assya says.
‘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.’
JEB is a condition for which there is no cure, and one which leaves sufferers 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.
Assya’s JEB was diagnosed when she was first born, and was so severe that doctors believed she wouldn’t make it past 24 hours.
However, the Birmingham Acorn’s Children Hospitce ambassador was kept alive by being fed breast milk which was squeezed into her mouth through a soaked sponge.
Assya has continued to defy medical expectations, and has not only lived far beyond what was predicted, but has also made huge achievements throughout her life.
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. Very children with JEB survive into adulthood.
‘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’,’ says Assya.
The daily routine of keeping her skin clean can take Assya up to six hours a day, but she hasn’t let it stop her.
‘I passed my driving test. A lot of people thought I’d never drive but I proved them wrong,’ says Assya.
‘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.’
In 2018, Assya also met Prince William when he visited Acorn Children’s Hospice, and gave him a tour of the building, thirty years after his late mother Princess Diana opened the Hospice back in 1988 (the year after Assya was born).
She doesn’t plan on stopping with her campaigning and awareness-raising either. The judgmental stares she gets in public only spur her on to continue breaking taboos.
She says, ‘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, pursue 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.’
If you’d like to follow Assya’s inspirational journey, you can do so on Instagram.
Do you have a story like Assya’s? Have you defied expectations to achieve your goals and help others? Get in touch at MetroLifestyleTeam@metro.co.uk.
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source https://metro.co.uk/2020/01/04/woman-wakes-morning-covered-blisters-bad-sticks-bed-12000513/
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