A woman who suffers from an incurable condition says her skin is as “fragile as butterfly wings”.
Assya Shabir, from Birmingham, was born with junctional epidermolysis bullosa (JEB) – a form of EB that describes a group of genetic conditions that affect a person’s skin.
The 36-year-old often has to deal with blistering, open wounds, skin loss, friction and irritation – heavily impacting her day-to-day life.
She is often “judged or ignored” by strangers and is in and out of the hospital for treatment.
“My skin is as fragile as a butterfly’s wings,” Assya, who shared her journey on Instagram with her 10,900 followers (@assyaebqueeen), told NeedToKnow.co.uk.
“The slightest grip or even a bump can blister and graze my skin.
“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.”
Sadly Assya also has to put up people staring 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’ve also had people move themselves or their children away from me.”
Certain types of the genetic condition – including JEB can be fatal – to newborns.
Assya, who is an ambassador for Acorns Children’s Hospice, says that four of her aunties tragically 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 and each time, she fears for her life.
But she says her faith and family help her through the challenging 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.”
In terms of 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.
“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.”
