Life
Gorham's disease

By Candice Fernandez


Now that’s a real case of putting your foot in your mouth! A woman whose jaw disintegrated due to a rare bone disease has revealed that doctors managed to save her smile – by implanting her TOE into her FACE.

PIC BY Simon Jacobs/Caters News

Hayley Dix, from High Wycombe, Buckinghamshire, was diagnosed with the Gorham’s disease – a rare skeletal disease that causes bones to erode – when she was 11 years old.

Her jaw had eroded so much it had snapped in half, leaving her severely disfigured.

But she’s learned to smile again after undergoing a pioneering operation to have her second largest toe amputated to rebuild her jaw.

And she’s now raising awareness of her rare condition by sharing her story across social media – after suffering a lifetime of bullying because of her looks.

PIC BY Simon Jacobs/Caters News

Full-time mum Hayley, 30, said: “The disease began in my mouth, then it went across my skull, at one point it was so close spine that it was life threatening.

“Cruel bullies used to tell me I looked like I’d been run over by a tractor.

“After having chemotherapy and calcitonin injections, my jaw had become so thin that it actually broke.

“I was in agonising pain, my bones were wasting away.

“My confidence was at rock bottom, and doctors told me they could help rebuild my face – but they’d have to amputate my toe to do it, to make a jaw hinge.

“I didn’t have a childhood, my teenage years were spent in hospital.

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“But after my surgery, I started to regain my confidence and that’s when I met my now fiancé, Aaron.

“He didn’t judge me for illness and we are finally having our dream wedding in five months’ time.”

“There is still a chance the disease could come back. Because it is so rare, no one knows what the future holds.”

Hayley’s childhood was spent in and out of hospital and claims that her differences made her a target for bullies.

She added: “In primary school there was a group of girls who would laugh at me and throw pencils and rubbers at me.

“A boy in secondary school asked me if my face had been hit by a truck.

“The horrible comments I used to get when I was younger really stung.

“My school once held an assembly when I was in hospital one day. The head teacher told the whole school that I wasn’t well and explained my illness to the kids.

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“When I got back I think people understood why I looked the way I did a bit more.”

Gorham’s disease – which is also known as the bone vanishing disease – has affected all aspects of Hayley’s life but she’s determined not to let it ruin her future.

Hayley said: “I’ve had my nerves and arteries taken from my legs.

“I’ve had my toe amputated and also a metal plate put into my face to keep my new jaw bone in place.

“I was told that if my condition had spread to my spine that I could have died.

“Thankfully after treatment, my bones stopped eroding across my face and since the age of 21 I haven’t needed further amputations or surgeries.

PIC BY Simon Jacobs/Caters News

“It is inactive at the moment but there is still a chance it could come back before it’s so rare, no one knows what the future holds.

“But thanks to my supportive family and Aaron, I am able to now accept myself.”

Hayley fell pregnant four years ago with son, Ruben, and due to her facial disfigurement claims school parties and meeting other parents can be difficult.

She added: “Now that my boy is older, when I go to birthday parties, his friends do stare at me. I still find that hard.

“Because he is such a sociable little boy, he will go play with other kids and the kids will ask what is wrong with my face.

PIC BY Simon Jacobs/Caters News

“Most of the time they aren’t doing it to be nasty. They are doing it because they are intrigued. I know I look different.”

Lisa Klepper, director of Patient Programs from Lymphangiomatosis & Gorham’s Disease Alliance said: “GSD most commonly affects the bones of the skull, jaw, spine, ribs, and pelvis.

“People with the disease also may have lymphatic malformations in other parts of the body, including the lungs, this results in the collection of a fat-rich fluid called chyle in the thorax and abdomen.

“For reasons not understood, some patients’ bone loss ceases spontaneously and may remain dormant for many years.” The disease is so rare that there has been fewer than 300 cases reported in medical history.