A woman has revealed how a deadly, incurable condition leaves her skin covered in blisters and feeling as “fragile as butterfly wings”.
Assya Shabir, from Birmingham, was born with junctional epidermolysis bullosa (JEB) — an agonising genetic disease that affects a person’s skin.
Jam Press/Assya ShabirAssya Shabir, 36, from Birmingham, was born with junctional epidermolysis bullosa[/caption]
Jam Press Vid/Assya ShabirShe says the incurable condition leaves her skin feeling as “fragile as butterfly wings”[/caption]
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.
Assya said: “My skin is as fragile as a butterfly’s wings. 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.”
Junctional epidermolysis bullosa is a deadly type of epidermolysis bullosa, a group of skin conditions that affect around 2,361 Brits.
The NHS set up a specialist service for people with EB 20 years ago, providing all patients in England and Wales with access to expert advice, treatment and genetic testing.
Research shows the number of people being born with the conditions has fallen over the last 19 years, with experts crediting the fall with improved genetic counselling.
The life expectancy for babies with lethal JEB has also improved slightly because of better neonatal care, researchers say.
Treatments include dressings, creams and ointments to prevent life-threatening infections when blisters become open wounds.
Some blisters have to be lanced with a hypodermic needle to stop them from spreading and painkillers can be prescribed.
Assya says the condition means she sadly has to put up with people staring or making faces at her in public.
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.”
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
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 feared 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.”
What are the symptoms of junctional epidermolysis bullosa
Epidermolysis bullosa symptoms include:
Fragile skin that blisters easily, especially on the palms and feet
Nails that are thick or unformed
Blisters inside the mouth and throat
Scalp blistering and hair loss (scarring alopecia)
Skin that looks thin
Tiny pimple-like bumps (milia)
Dental problems, such as tooth decay
Difficulty swallowing
Itchy, painful skin
Source: Mayo Clinic
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.
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.”
Jam Press/Assya ShabirAssya has to deal with blistering, open wounds, skin loss, friction and irritation[/caption]
Jam Press/Assya ShabirAssya says she sadly has to put up with people staring or making faces at her in public[/caption]