[Above] Assya Shabir was born with epidermolysis bullosa, which is a rare genetic condition where her skin is covered in blisters.

Brave woman who suffers agonising blisters over her fragile ‘butterfly wing’ skin says she feels ‘completely blessed’

When she was born she was given 24 hours to live – but now is confidently and happily approaching her 30th birthday.

Assya, who is from Birmingham, has to struggle daily with painful blisters than cover her skin and internal organs.

But that hasn’t stopped the inspiring woman from embracing life and choosing to think positively.

She said to BBC as part of their Faces of England project: “I feel like I am completely blessed because this life is a test in my eyes.

“This is nothing. I could be much worse so I am thankful for everything I have. It’s all about patience and enjoying life.”

In a bid to raise awareness for the skin condition, Assya shares images on social media of her day to day life.

She also wants to help raise money by taking part in a charity skydive for the hospice she credits with keeping her positive.

In a poignant video, she proudly shared how she had been treated to two recent makeovers.

She said: “I just felt normal for one and I felt so special. You know how they say you look like a million dollars – but I literally felt like it.”

WHAT IS EPIDERMOLYSIS BULLOSA?

Epidermolysis bullosa (EB) is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile.

In people with EB, any trauma or friction to the skin can cause tears and blisters.

Types:

There are three main types of the condition:

  • Epidermolysis bullosa simplex: blistering occurs in the upper layer of the skin. This is the most common type of EB, accounting for 70 per cent of cases, and tends to be milder than the other types.
  • Dystrophic epidermolysis bullosa: blistering occurs below the basement membrane zone in the upper part of the dermis. DEB accounts for around 25 per cent of cases.
  • Junctional epidermolysis bullosa: blistering occurs at the junction between the epidermis and the dermis (lower layer of the skin) in a layer of skin known as the basement membrane zone. JEB accounts for around 5 per cent of cases and is usually considered the most severe type of EB.

Cause:

EB is caused by faulty genes. In most cases these are inherited from one or both parents but sometimes the fault occurs spontaneously.

It is a result of not enough collagen being produced in the skin.

Treatment: 

There is no cure for EB, but treatments aim to relieve symptoms.

Most treatments can be done at home, such as popping blisters with a sterile needle, applying protective dressings and avoiding things that make the condition worse.

The heroic woman isn’t the only person to battle with the condition.

Madisyn Yuhas hug or a cuddle, could shred the teen’s skin down to the muscle, which means she must be covered in bandages from the neck down.

The heroic woman isn’t the only person to battle with the condition.

Madisyn Yuhas, 18, who has Recessive Dystrophic Epidermolysis Bullosa (RDEB) weighs a tiny six stone because chewing causes painful blisters in her mouth, so she is unable to eat.

Affectionate actions,

, 18, who has Recessive Dystrophic Epidermolysis Bullosa (RDEB) weighs a tiny six stone because chewing causes painful blisters in her mouth, so she is unable to eat.

Affectionate actions, like a


JOHNNY KENNEDY WAS QUITE A CHARACTER

like a hug or a cuddle, could shred the teen’s skin down to the muscle, which means she must be covered in bandages from the neck down.

 

 

 

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