Every morning wake 32-year-old Assya Shabir from Birmingham glued to his bedding because of the many suppurating blisters, she has over his entire body.
Already at birth was Assya Shabir diagnosed with junctional epidermolysis bullosa (JEB), which is the most severe type of epidermolysis bullosa.
the Disease, which means that both her skin and internal organs are so fragile that even the slightest movement or injury can cause the skin to form blisters with fluid. That's why her skin stuck to both the bedding and pajamas every morning.
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Assya says that she experiences a lot of prejudices, when people see her skin. Photo: MDWfeatures / Assya Shabi
Assya Shabir tells his story to the Media Drum World, just like she continuously shares pictures from her life with junctional epidermolysis bullosa on her Instagram profile.
As Assya Shabir was born, doctors said she likely would die within the first 24 hours. Children with junctional epidermolysis bullosa typically have a shorter life than the average. Often the cause of death malnutrition, because many also get blisters in the mouth and esophagus, making it difficult and painful to eat.
But Assya Shabir defied the doctors ' guess several times through childhood, and now they kept up with the counting.
MDWfeatures / Assya Shabi
Through her life she has tirelessly fought to raise awareness of the disease, estimated to affect one in 50,000 live births per year. It corresponds, according to health.dk for one child per year in Denmark.
Assya Shabir tells, among other things openly about how she is every single day use up to six hours to clean and cover his wounds and only goes in the bath every other day, because the water causes the skin to form blisters. Moreover, her illness, that her hair falls off, and she goes, therefore, with the wig, when she should be out.
- There is not a millimeter of my body, where I haven't had blisters. I get blisters in the mouth, in the eyes, in the ears and on the internal organs such as my heart, tells the 32-year-old briton to the Media Drum World.
most with JEB, does not live longer than their first year. Assya Shabir has defied the doctors ' guess several times. She is now 32 years old and has, among other things, met prince William. Photo: MDWfeatures / Assya Shabi
People who suffer from junctional epidermolysis bullosa often find it easier to get infections, because their skin is very fragile. It can lead to life-threatening blood poisoning, or loss of body fluid, which in turn can lead to deyhydrering.
- Depending on how bad it is with my skin the day, I'm sometimes okay, but then an hour later my skin have become worse. Blisters can jump back anytime, says Assay Shabir, and continues.
- I have to change my bandages on his feet every day - sometimes twice a day, so it is more comfortable, and so I can walk or run.
But even though her disease is a lot of work and a great inconvenience to Assya Shabir, refuses to let it stop her from achieving its many goals.
She has among other things taken the bachelor's degree in businessmarketing and sales at the university and tried to skydive for a good purpose.
- I saw my fear of heights in the eyes and decided to skydive for charity - for Acorns Children's Hospice - in april 2017.
- It was the best experience ever. The adrenalin rush and the fact that everyone doubted that I would implement it, it pushed me to do it, says Assya Shabir to the Media Drum World.
Assya met prince William when he visited the Acorns Children's Hospice in 2018. Photo: MDWfeatures / Assya Shabi
She also says that another big moment in her life was when she met prince William at Acorns Children's Hospice, as she herself is ambassador of.
Now the dream she is about to get raised a lot and tell far and wide of his illness.
- I would really like to do some big things and bring more attention to my skin. I would like to travel more in the year. I will see the world a little more, also if it is just the Uk - I want to go out and live life and have more time with my family and friends and hopefully make new friends, she says.
Epidermolysis bullosa
Epidermolysis bullosa (EB) is an umbrella term for a group of rare, hereditary diseases, where the skin is vulnerable to pressure and heat, so that mechanical influences leads to blisters (bullæ) on the skin and slimhinderHyppigheden is estimated at 1 per 50,000 to levendefødte1, amounting to one child per year in DanmarkVablerne may quickly burst and leave superficial, exuding sårDer are four main groups and many undergrupperVed some of these complications from the skin and other organs be debilitating and livstruendeEB due to defects in the proteins that anchor the epidermis to the underhudenTidlig diagnosis and treatment in a multidisciplinary, highly specialised team is essential for the forecast at EB
Epidermolysis bullosa simplex
Blisters occur at the top of the basalmembranenJo more superficial blisters are, des milder is symptomerneSår heals often without ardannelseBedres under pubertetenDer are, however, rare severe forms with involvement of the mucous membranes and high mortalityJunctional epidermolysis bullosa
Blisters occur in the junction, transition zone between basalmembran and læderhudNæsten all have blisters in mundslimhindenVablerne occurs throughout the livetDer are, however, milder forms, with limited udbredningInfektion in the wound leading to scarringDystrofisk epidermolysis bullosa
Blisters occur at the bottom of the basalmenbranen against the dermis as well as in slimhinderSårhelingen work poorly and there is formed arSource: Health.dk
Assya Shabir spend a long time each day to care for his skin and cover his blisters. Photo: MDWfeatures / Assya Shabi
Photo: MDWfeatures / Assya Shabi
Assya Shabin trying to live as normal life as possible with his skin disorder. Photo: MDWfeatures / Assya Shabi
Assya Shabin is working hard to raise awareness about Epidermolysis Bullosa. Photo: MDWfeatures / Assya Shabi
