My goal to spread tolerance of disease

7:34pm Wednesday 2nd May 2007

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By David Watkinson »

A WOMAN with an extremely rare disease that has left her with legs weighing 11 stones has spoken of her dream of helping other people.

Mandy Sellars, 32, suffers from Proteus syndrome, the same condition that affected 'Elephant Man' Joseph Merrick.

It is so rare doctors don't know why it affects some and not others.

Only a handful of people in the world have it.

Mandy, who lives in Bolton Avenue, Huncoat, but grew up in Bacup, said that she is determined that the disease will not make her a recluse.

The university graduate, who is unemployed, has struggled to find work because of her mobility problems.

She said: "I dream of being a counsellor. I know what it is like to go through difficulties and I want to be able to help people."

Mandy said that she often has to put up with stares from strangers - as well as hurtful comments about her appearance.

Her illness only affects her legs and feet. She is only a small size eight in her upper body and has a 28-inch waist but her legs - which are still growing - are 35 inches at the bottom and 28 inches at the top.

She said: "People can be so rude. I actually quite like people coming up to me and asking about my condition but it is people who are rude or just blurt out comments like look at her legs' that is the worst.

"I want people to read about my condition so they understand it more and can be more tolerant."

Mandy, who has a psychology degree from the University of Central Lancashire, said she tries to live a normal life.

She enjoys spending time with friends and driving her specially adapted car, which she operates with hand controls.

She has also had boyfriends over the years and said: "I lead a fulfilling life and I'm happy the way I am.

"As for children, I think that I could have them but I'm not that maternal."

Mandy's condition means that her legs and feet keep growing and growing.

She is still able to walk but has been told that she will eventually have her legs amputated because there is no treatment or cure for the disease.

She said: "They just keep on growing and we don't really know why. At the moment I can walk okay.

"I need crutches because my balance is poor but I am determined to keep on moving as long as I possibly can.

"I don't know if that will be two years or 20 years."

Mandy said she has already made plans for life after she loses her legs.

She said: "I want to do all of the things that I can't do now.

"I want to do the London Marathon in a wheelchair and I want to go white-water rafting."

Mandy has to have her shoes made specially at Burnley General Hospital and her mother June, 56, who lives in Mill Street, Bacup, makes all of her trousers.

She hasn't worn a skirt since she was three.

Mandy added: "When I was born the doctors didn't know if I would live or die but I'm still here at 32!"

The Lancashire Telegraph's resident doctor Dr Tom Smith said: "Proteus syndrome is a disorder that is so rare that I have never seen a case myself but this lady's attitude and bravery is wonderful."

l Mandy will be featured in My Shocking Story: Can't Stop Growing on Discovery Channel, tomorrow, at 9pm.

>> FACTFILE

Proteus syndrome causes an overgrowth of skin, bones, muscles, fatty tissues, and blood and lymphatic vessels.

It is not a genetic condition and doctors do not know why sufferers are affected.

Proteus syndrome is a progressive condition, wherein children are usually born without any obvious deformities. As they age, tumours as well as skin and bone growths appear. The severity and locations of these can vary greatly among sufferers.

Since Proteus syndrome was first discovered in 1979, only a few more than 200 cases have been confirmed worldwide. Today it affects around 120 people.

Mandy is affected with overgrown legs and feet. Her left foot is growing backwards. She has also suffered from deep-vein thrombosis as a result of the disease and has to regularly undergo blood thinning treatment to ensure her circulation remains.

Joseph Merrick, the Elephant Man, found fame in Victorian England working as a sideshow attraction. He suffered from a large facial disfigurement as a result of Proteus syndrome.