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HealthRelationshipsTop StoriesA Woman Has Told How She Has Found Love After Years Of Depression Over Rare Disease That Made Her Face Collapse

A Woman Has Told How She Has Found Love After Years Of Depression Over Rare Disease That Made Her Face Collapse

A woman has revealed she was left disfigured and suicidal after a rare disease made her face collapse – but has now found love.

Karla Deyes, now 26, was rushed to hospital as a five-year-old when she had major convulsions.

Two years later she was diagnosed with Parry-Romberg syndrome, which causes shrinkage and degeneration of the tissues beneath the skin.

It meant the left side of her face was slowly “falling or melting away”, leaving her with a lop-sided or asymmetrical appearance.

Brave Karla endured years of depression and botched operations and often told her family she wanted to die.

Her self-esteem plummeted and she shied away from cameras and mirrors and even covered her face with her hair.

But now, thanks to jaw surgery, new found confident and a transfer of fat to her face, Karla has never been happier – and is loved up with her boyfriend Luke, 29.

Karla hopes she can inspire other Parry-Romberg sufferers to be proud of the way they look.

Collect of Karla Deyes at age 4 and a half just after she had her MMR booster jab.

Commercial administrator Karla, of Burnham-on-Crouch, Essex, said: “There was no one to talk to growing up because I didn’t know anyone else who had what I had.

“I felt like the only one like me in the world.

“One time I was with my aunt, and I told her that I would rather die of cancer tomorrow than have a whole life dealing with this. She was in bits.

“From the age of six, I knew I wasn’t normal. I could see the whole left side of my face begin to sort of fall away or melt away – it was lopsided by the time I was a teenager.

“My left leg was not growing as quickly as my right. It was affecting the amount of muscle and tissue I had on that side of my body – that side is still thinner.

“My family told me not to care about what people thought, or how I looked. That didn’t stop me from covering the left side of my face with my hair because I was sad.

“School kids would sometimes laugh or stare but I would try and avoid situations by walking around them or crossing the road.

“Now I can hold a conversation with someone again. I can walk down the street and not care what anyone who looks at me thinks. I can look someone in the eye again.

“In my view, if you can find someone to help, you should do it.”

Though it can lie dormant for years, Parry-Romberg syndrome can be triggered by a trauma, and Karla said hers came on just after having MMR booster vaccine.

Parry-Romberg syndrome is incredibly rare and there is no evidence to suggest it is caused by vaccinations.

She was was an ordinary girl with no apparent health issues before she was rushed to Old Church Hospital, Romford, for treatment for a convulsion.

“I don’t remember much about it anymore, but I can remember walking around the hospital on a drip for a while,” she said.

Karla underwent a painful transition as the disease started to attack one side of her body and slowly began to spread to the other.

“When I was five, I couldn’t wear certain shoes because it was so painful,” she said.

“Shoes were and still are the only clothing I struggle with.”

After years of testing, Karla was eventually diagnosed with Parry-Romberg syndrome, and was prescribed a strong chemotherapy agent to stop it spreading.

The disease had caused her spine to curve sideways as her right side grew more quickly than her left.

At one point, she was told she could be in a wheelchair before she turned 30.

When she was 11, the doctors drilled through Karla’s right knee to stop the growth on her right side and to correct her twisted spine.

And two years later, she had reconstructive facial surgery which went wrong, leaving Karla with damaged facial nerves and deep scars.

“The operation failed – it killed all the nerves in my face and I have no feeling in my face,” she said.

“It sounds extreme, but I had to learn to eat and to drink again.

“Apart from the scars, you couldn’t tell that I’d had anything done.”

Karla became depressed, hiding her face and shying away from the camera and mirrors to cope with what had happened.

Though her family supported her, she felt alone.

“It was harder when I was younger, though, because they would want me to be happy,” she said.

“They rooted for me – but they also willed for me to be something I wasn’t.

Karla had jaw surgery aged 18 and a surgical fat transfer – known as grafting – to fill out her face aged 22.

Karla’s confidence was at an all-time high, and she showed off her personality and her face by having her hair cut shorter.

She started dating, and is smitten with boyfriend Luke, a project manager from Woodham.

But what Karla really hopes is that she can inspire other Parry-Romberg sufferers to pick themselves up and take pride in their appearance.

“There must be other people suffering like I did – but I’ve not met anyone with it yet. I’ve always wanted to do well in life, I’ve always wanted to prove people wrong.



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