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'Cherubism and me'

Article provided by NHS Choices

Victoria Wright was born with cherubism, a rare genetic disorder that causes an over-growth of fibrous tissue in the face.

She has been called names like fat chin, Buzz Lightyear and Desperate Dan. At school, a girl threatened to punch her eyeball "back into place".

Yet, despite the difficult years she has had growing up with her condition, her self-assurance is clear. Victoria speaks engagingly and with humour about living with a facial disfigurement.

"A girl used to draw pictures of me in class and share them around," says Victoria, from London.

The tormenting only made her more determined to stand up for herself. "I have a very strong sense of who I am and how I want to live my life," she says.

"I don't want to hide at home, afraid to go out and afraid of other people. If they have issues about how I look it's their problem, not mine."

First signs

Victoria was about four years old when the first signs of cherubism appeared. "My mum was brushing my teeth and she noticed they weren't in the right place."

Cherubism, named after the chubby-cheeked, angelic figures in Renaissance art, runs in Victoria's family, although in a much milder form.

It was thought that Victoria's condition would regress after puberty, but it didn't. Instead, her jaw grew larger and it began affecting her eyes.

She had surgery to relieve the pressure on her eyes, which saved her eyesight, but she still suffers from headaches due to her impaired vision.

"Cherubism isn't a painless condition," she says. "I do get twinges of pain. My head is very heavy. Doctors say it's as heavy as a bowling ball.

"I've been offered surgery on my jaw to make it smaller, but I don't think it would improve my appearance," she says. "I'm used to the way I look."

Victoria has been falsely portrayed in the media as being anti-cosmetic surgery because of her decision not to have the size of her jaw reduced.

She is not against surgery and says: "I'm certainly not against people with disfigurements having surgery, but I'm fine with the way I look. Why should I have the surgery for other people?

"I'm happy with my face most days. After all, I'm a woman, and no woman is completely happy with the way she looks. But I'm not going to change myself to make other people happy."

Unsettling stares

Victoria has never got used to the stares, although she understands that it's a natural human reaction. "I try not to take it too personally. We all stare, even me," she says.

"As a teenager, I used to get angry, but that doesn't do any good to you or the person staring. It just reinforces the stereotype that people with disfigurements must be angry, tragic or scary.

"If I find myself being stared at in an aggressive way, it can be unsettling. But I don't let it get to me.

"If someone's staring out of curiosity, I just smile and nod to show them I'm a human being and there's nothing to be scared of.

"Most of the time, people smile back. That's a good feeling, because I know I've made a small connection with them."

The support she's received throughout her life from family, friends, teachers and Changing Faces, the disfigurement charity, has been crucial.

"There are fantastic role models at Changing Faces," she says. "Lots of staff members there of all ages have a facial disfigurement.

"As a teenager meeting them, I felt, 'Wow, you can have a career, and be happy and confident with a disfigurement'.

"Sometimes you can feel isolated, especially if you have a rare condition. It's difficult if you don't see anybody else in the street like you. Getting peer support is so important. 

"For every person who stares, there are a hundred others who don't and who will like and respect you for who you are."

Article provided by NHS Choices

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