A woman who experiences an incurable condition says her skin feels as "fragile as butterfly wings".
Birmingham-born Assya Shabir, 36, was born with junctional epidermolysis (JEB) - a type of epidermolysis bullosa, a term that describes a group of genetic conditions that affect a person's skin. Daily, she is forced to deal with open wounds, blistering, friction, irritation and skin loss - which have all head a serious impact on her day-to-day life.
She says she's "judged or ignored" by strangers, and is frequently in and out of hospital for treatment. Assya shared her journey on Instagram with her 10,900 followers (@assyaebqueeen) and told NeedToKnow.co.uk: “My skin is as fragile as a butterfly’s wings. The slightest grip or even a bump can blister and graze my skin.
Assya Shabir (Jam Press/Assya Shabir)
She is often “judged or ignored” by strangers and is in and out of the hospital for treatment (Jam Press/Assya Shabir)“It’s not just external; I get blistering in my oesophageal system, eyes, mouth, gums and other areas too. Living with JEB is complicated at the best of times, it doesn’t just affect me physically but mentally and emotionally too.
“It is hard to find genuine friendships and relationships. Some people don’t acknowledge me – they’ll judge or ignore me.”
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But Assya has also had to experience people staring at her or making faces. She said: “Most of the time I try not to react or even respond.
“But when I’m going through a flare-up and I’m already feeling worse because the pain is unbearable and I’m already feeling useless as it is, their looks hit hard and just make me feel like s**t. I’m sure you can imagine the kinds of comments I get too.
“Ironically it’s from adults more than kids – yes of course kids comment but they’re not aware of why I look different, I always say kids are very innocent. One of the worst ones I’ve had face to face is ‘you look like Freddie Kruger’ and ‘your mum should have aborted you’.
'I’m sure you can imagine the kinds of comments I get too' (Jam Press/Assya Shabir)
'I’ve also had people move themselves or their children away from me' (Jam Press/Assya Shabir)“I’ve also had people move themselves or their children away from me.” Some types of the genetic condition - including JEB - can be fatal to newborns.
Assya works as an ambassador for Acorns Children's Hospice and says four of her aunties sadly also suffered from EB and died. She said: “We’re not sure of which types they had, but from what my mother remembers they had similar wounds and blistering as me.
“So most likely they did have junctional epidermolysis bullosa. They all died from JEB, between three and 12 weeks old.”
In the past year, Assya has been in and out of hospital with sepsis. She fears for her life, but says her faith and family will help her through difficult times.
She said: “This year has been the hardest yet. When I’m in hospital, it's sad, because I think that this may be the last time I see my family, my nieces and nephew and my friends because I might not make it home.
“I also struggle with the fact that I am now older but still have to depend on others to care for me. But being able to say I’m 36 and still alive and strong is the biggest achievement of my life. And I am blessed with the best family and circle of friends.”
'Living with JEB is complicated at the best of times, it doesn’t just affect me physically but mentally and emotionally too' (Jam Press/Assya Shabir)
'Some people don’t acknowledge me - they’ll judge or ignore me' (Jam Press/Assya Shabir)Regarding her pain and symptoms, each day is different. She said: “Some days I can wake up in less pain and other days I can be in excruciating pain and discomfort to the point where I cannot get out of bed.
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“It all depends of my skin, body and overall mental health. Most days I try my hardest to just keep going.”
To raise awareness, Assya shares her day-to-day life on Instagram, including a recent clip of her blistered, bruising and peeling skin, which has over 2,900 views. The content creator takes comfort in her “online family”.
She added: “My online family are so amazing, they’re always praying for me, sending me positive vibes and sending me messages to say that I help them be hopeful. The reason for sharing my life on social media has only been about sharing awareness of Epidermolysis Bullosa and how it affects my life day to day.
“How it affects me mentally, emotionally and physically. Life is a blessing, you need to be able to see the positivity in everything, as life could be a million times worse than it is.”
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