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Woman, 32, was expected to die as a newborn of a rare condition that causes pus-filled blisters

A woman claims that she wakes up every morning and is stuck to her sheets because of a rare condition that causes pus-filled blisters all over her body.

Assya Shabir, 32, was diagnosed with junctional epidermolysis bullosa (JEB) at birth, the most severe type of epidermolysis bullosa.

The incurable condition means that her skin and internal organs are so fragile that the slightest movement, scratch or injury causes blisters to appear.

The painful blisters exude sticky pus, meaning she wakes up with her skin attached to her bedding and pajamas.

Mrs. Shabir, from Birmingham, spends up to six hours a day cleaning and dressing her wounds and only bathes every other day because the water causes blistering. The condition also causes her hair to fall out.

When she was born, doctors said she would probably die within 24 hours because the condition has such a short life expectancy.

Children with JEB usually die from malnutrition because the blisters affect the inside of the mouth and digestive tract, making it difficult to eat. They are also more sensitive to catching infections because their skin is so vulnerable.

Even breastfeeding proved too painful for Mrs. Sabir, who had blisters on her face and in her mouth from birth. But her mother was able to “save her” by pressing sponges filled with breast milk into her mouth.

But Mrs. Shabir has surpassed the odds and continues to make JEB aware, despite the fact that she was cruelly judged by others during her life.

She even met Prince William in her role as ambassador for Acorn’s Children Hospital, which was opened by his late mother Princess Diana in 1988.

Assya Shabir, 32, wakes up every morning with her skin stuck to her sheets because of a rare condition that causes pus-filled blisters all over her body. She is pictured without makeup

Assya Shabir, 32, wakes up every morning with her skin stuck to her sheets because of a rare condition that causes pus-filled blisters all over her body. She is pictured without makeup

Doctors said Mrs. Shabir would hardly live 24 hours. But year on year, Mrs. Shabir has proven that doctors are wrong. She raises awareness of her condition - junctional epidermolysis bullosa (JEB) - and has even met Prince William as an ambassador for Acorn's Children Hospital

Doctors said Mrs. Shabir would hardly live 24 hours. But year on year, Mrs. Shabir has proven that doctors are wrong. She raises awareness of her condition - junctional epidermolysis bullosa (JEB) - and has even met Prince William as an ambassador for Acorn's Children Hospital

Doctors said Mrs. Shabir would hardly live 24 hours. But year on year, Mrs. Shabir has proven that doctors are wrong. She raises awareness of her condition – junctional epidermolysis bullosa (JEB) – and has even met Prince William as an ambassador for Acorn’s Children Hospital

The skin and internal organs of Mrs. Shabir are covered with blisters that are vulnerable to infections. It also ensures that her hair falls out (photo)

The skin and internal organs of Mrs. Shabir are covered with blisters that are vulnerable to infections. It also ensures that her hair falls out (photo)

The skin and internal organs of Mrs. Shabir are covered with blisters that are vulnerable to infections. It also ensures that her hair falls out (photo)

Speaking of her debilitating condition, Mrs. Shabir said: “I get blisters internally and externally from head to toe.

“There is no millimeter on my body where I have no blistering. I get blisters in my mouth, eyes, ears and on internal organs such as my heart muscles.

‘I struggle with everything I do every day: getting up, getting ready, eating; it affects the inside of my organs and mouth.

‘I wake up in the morning with a lot of blisters, or stuck to bed, or my pajamas will stick to my blisters, so it takes longer to get up. ”

JEB is the most serious form of epidermolysis bullosa, a group of genetic disorders that make the skin very vulnerable.

It is estimated that EB occurs in 20 newborns per million births in the US, according to statistics collected through the National Epidermolysis Bullosa Registry.

The exact number of people with EB is unclear, but an estimated 25,000 – 50,000 people are affected in the US and 5,000 people in the UK.

Figures suggest that babies with the most severe form of JEB are not likely to survive after their first or second birthday. Only a few children with JEB survive into adulthood.

Mrs. Shabir (depicted as a child) received the first birthday from JEBeir

Mrs. Shabir (depicted as a child) received the first birthday from JEBeir

Mrs. Shabir (depicted as a child) was diagnosed with JEB at birth. About half of the people diagnosed with JEB do not survive after their first birthday

Mrs. Shabir said, “I wake up in the morning with a lot of blisters, or stuck to the bed, or my pajamas will stick to my blisters, so it takes longer to get up.”

Mrs. Shabir spends her blisters up to six hours a day. She is pictured before and after applying makeup and wearing a wig on her 30th birthday

Mrs. Shabir spends her blisters up to six hours a day. She is pictured before and after applying makeup and wearing a wig on her 30th birthday

Mrs. Shabir spends her blisters up to six hours a day. She is pictured before and after applying makeup and wearing a wig on her 30th birthday

WHAT IS EPIDERMOLYSIS BULLOSA?

Epidermolysis bullosa (EB) is a general term used to describe a group of rare, inherited disorders that make the skin very vulnerable.

Any trauma or friction causes the skin of the patient to blow.

It affects around one in every 50,000 people worldwide.

About 40 percent of patients do not survive the first year and most do not live older than five years.

The three main types of the disorder are:

  • EB simplex – where blistering occurs in the upper skin layer. This affects 70 percent of the patients
  • Dystrophic EB – where blistering occurs in the upper layer below the skin surface, affecting 25 percent of patients
  • Junctional EB – where blistering occurs in the lower layer of the inner skin, which is usually the most serious form of the disorder

Most cases are clear from birth.

EB occurs because of defective genes, which can be inherited or occur spontaneously.

There is no medicine.

The treatment is aimed at relieving pain and treating complications such as infections or skin cancer.

Source: NHS Choices and the national organization for rare diseases

In addition to the blisters and incredible pain that Mrs. Shabir suffers, she is also susceptible to infections due to her weakened immune system.

Mrs. Shabir, who is not working at the moment, said: “When I was first born, they told my parents that I only had 24 hours to live and luckily my mother saved me.

“Those little pink sponges, she used them and dipped one into her breast milk and squeezed some milk into my mouth.

“Then they gave me maybe a month to a year, and then it might have been two to five years, and when I turned ten, they stopped counting because they were looking for” it makes no sense that she has exceeded the expected age limit. ” “

The blisters cover large parts of the body. They also affect the mucous membranes, such as the moist lining of the mouth and the digestive tract. As a result, many affected children are malnourished and grow slowly because eating or digesting food is painful.

The extensive blistering makes the skin vulnerable to bacterial infections, which can lead to life-threatening sepsis or moisture loss, causing dehydration.

Scar tissue, called granulation tissue, can also accumulate in the airways, causing breathing difficulties.

Ms. Shabir’s daily life is to ensure that her skin is clean and connected, a routine that can take up to six hours a day to complete.

She said: ‘Depending on how bad my skin is on that day, sometimes I am fine, but then an hour or so later my skin is worse. Blisters can flare up at any time.

‘I have to change my bandage on my feet every day – sometimes twice a day, so it’s more comfortable, and then I can walk or drive.

‘I take a bath every other day or two … I don’t have showers because showers affect my skin more because of the pressure of the shower, especially on my feet because water from that distance falls from top to bottom creates blisters. “

Despite the gigantic task of looking after her skin, Mrs. Shabir never prevented her from achieving numerous goals.

As a child, Mrs. Shabir (pictured left) had her hair cut short to prevent her hair from getting stuck to her blister-like skin. She does not shower often because this can cause blistering

As a child, Mrs. Shabir (pictured left) had her hair cut short to prevent her hair from getting stuck to her blister-like skin. She does not shower often because this can cause blistering

As a child, Mrs. Shabir (pictured left) had her hair cut short to prevent her hair from getting stuck to her blister-like skin. She does not shower often because this can cause blistering

Mrs. Shabir, pictured with Professor Benjamin Zephaniah during the campaign, said when she was ten years old that doctors stopped trying to predict how long she would survive

Mrs. Shabir, pictured with Professor Benjamin Zephaniah during the campaign, said when she was ten years old that doctors stopped trying to predict how long she would survive

Mrs. Shabir, pictured with Professor Benjamin Zephaniah during the campaign, said when she was ten years old that doctors stopped trying to predict how long she would survive

JEB causes a weak immune system and susceptibility to infections. Despite the gigantic task of looking after her skin, Mrs. Shabir is trying to live a normal life. She is pictured with makeup on

JEB causes a weak immune system and susceptibility to infections. Despite the gigantic task of looking after her skin, Mrs. Shabir is trying to live a normal life. She is pictured with makeup on

JEB causes a weak immune system and susceptibility to infections. Despite the gigantic task of looking after her skin, Mrs. Shabir is trying to live a normal life. She is pictured with makeup on

Mrs. Shabir has completed a basic degree in business marketing and sales at the university, met royalties and did a skydive for charity.

She said: ‘I was confronted with my greatest fear of heights and decided in April 2017 to do an aerial dive for charity, Acorns Children’s Hospice and Debra.

“It was the best experience ever, the adrenaline rush and the fact that everyone doubted that I would not go ahead, forced me to do it.

“More recently, in 2018, I had the honor of meeting Prince William at Acorns Children’s Hospice.

“I was so honored to give Prince William a tour of the Acorns Hospital for Children, thirty years after his late mother Princess Diana opened the Hospice in 1988.”

Mrs. Shabir has added: ‘I passed my driving test. Many people thought I would never drive, but I proved that they were wrong.

“I started at the age of seventeen but continued to stop my classes because of my health, but in the end I passed at the age of 25.”

Mrs. Shabir’s permanently blister-like skin means that she is confronted with spectators’ eyes every day.

She was recently frustrated by an older person who asked her family members what was “wrong” with her, instead of asking her directly.

Mrs. Shabir said: “I remember one time in college that a girl complained to her friends about her teenage places / acne and they said indirectly:” Look, imagine you were like that. I’d rather die than look so ugly. “

“Unfortunately, having a condition or something other than other people in the Asian community is taboo.

“I just want people to come out of the fact that just because you have a condition doesn’t mean you can’t do the normal human things that a woman will do, such as work, getting married, having a family, going through dreams.”

She added: ‘I really want to do bigger things and create more awareness for my skin and not just for my skin, but also for Acorn’s and create more awareness in the community.

‘I really want to travel more this year, hopefully. I want to see the world a little more, even if it is just the UK – set off and live life and make more time for family and friends and hopefully make more friends. “

For more information visit Mrs. Shabir’s Instagram.

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