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Doctors Baffled by Large Legs

Doctors Baffled by Large Legs

Mandy Sellar’s legs continue to grown and doctors can not explain why….

Mandy Sella’s has an extremely rare disorder that doctors simply can not explain: her legs keep getting bigger.

And because her condition is getting worse, the only advice that professionals can given her is to amputate both of her legs.

But the cheerful 33-year-old Briton from Accrington, says she just won’t be told.

mandy sellars oversized legs Doctors Baffled by Large Legs

She challenged medics’ verdict and flew to the US seeking a new treatment. Now she’s on a mission to find out once and for all what’s the matter with her.

“As you can imagine the size of my legs and clubfoot make walking difficult and I need crutches just to get around my ground floor flat…

“And people can be very cruel. I was in a park a few months ago when a group of teens started pointing at me, they were saying to each other, ‘Look at the size of her legs.’…

“I wish they could experience how it feels to have strangers laugh at you…

“I don’t mind curiosity – it’s the laughing and nudging that gets to me. “

Mandy’s legs are wider than the average man’s waist and heavier than most women. Her left leg, which is clubfooted turned 180 degrees, is five inches longer than her right.

She says: “I weigh about 20 stone – 15 of which are my legs.”

Mandy’s condition has been likened to Proteus syndrome, the cause of the Elephant Man, John Merrick’s, abnormal skin and limb growth.

“I use an electric wheelchair when I go out,” says Mandy.

“I live alone and what takes the average person half an hour takes me an hour, if not longer. Just getting dressed in the morning is a mammoth task…

“By the time I go into the kitchen to get breakfast, I can be exhausted. I can’t just pop to the shops, it all has to be planned.”

Mandy must drive a specially adapted hand-controlled car so she can still go out to do chores or see her friends.

I try to lead a normal life but I do get frustrated,” she says. “The worst thing about my condition is that my mobility is getting worse and I have no control over it.”

mandy sellars oversized legs childhood 1 Doctors Baffled by Large Legs

When Mandy was born, doctor thought she would only live for weeks. One leg was three inches longer than her other and both limbs were out of proportion. No one could explain her condition or knew how to treat it.

Despite the odds, Mandy survived and began walking at 18 months.

“I could never run as fast as my friends but I was still outside playing. I also learned to ride a bike but I kept the stabilizers on until I was 16…

“It’s embarrassing now when I think about it, but I didn’t care then,” she says laughing. “My legs started to grow when I was really small. I saw a lot of doctors, then when I was seven, one specialist told my mum I should have my legs amputated.”

Mandy’s mother June, 57, objected to the doctor’s suggestion and argued if her daughter could still run and play with friends there was no need to have her legs cut off.

“Mum was brave to stand up to the consultant. My parent’s have always been supportive and told me that I can do whatever I want to do…

“They realize that they won’t always be here and have encouraged me to be independent, so at 19 I left to live on my own…

“I was a normal teenager – I went out drinking, clubbing and ended the night with a kebab.”

mandy sellars oversized legs childhood Doctors Baffled by Large Legs

After college Mandy went to the University of Central Lancashire where she gained a BSc in psychology.

“I’ve got a quick mind but a full-time job would exhaust me,” she explains. “But I like to make the most of life.”

Mandy likes to keep active and social, she chats to friends via the Internet all day whilst finding time to write a book about her life. She also volunteers at the local RSPCA center at least once a week .

But unfortunately, her health keeps getting worse.

She has suffered arthritis, deep vein thrombosis (DVT) and had a blood clot in her leg. She was paralyzed from the waist down for two months.

“I had to learn to walk again which took three months,” she says.

“Three years later I bumped my leg and got a blood infection, then my kidneys then failed and I got MRSA…

“In all this time and during all of my visits to hospitals, I’ve never been given a definite diagnosis, except to be told it could be a form of this Proteus syndrome…

“No doctor has been investigated to any degree. I was beginning to believe I was the only woman in the world with it.”

The situation isn’t going to get better.

She says:

“As my legs get heavier they’ll put a strain on my heart and internal organs…

“I know that amputation and prosthetic legs are my only option to save my life but I’m unhappy with what the UK experts told me…

“They said the only way to do the op would be to amputate my left leg from the hip and the right leg above the knee…

“But I wouldn’t be able to sit up and would be even more disabled than now.”

When Mandy visited the US she met with renowned orthopedic surgeon Dr William Ertl and prosthetic whizz Kevin Carroll, specialists known for developing a prosthetic tail for a dolphin.

“What they told me gave me hope,” Mandy says.

“They said I could have a far less severe amputation. Now I feel much better informed to make a decision about amputation…

“The information I got in the US has been life-changing.”

Mandy also now has a UK doctor who is willing to search for the elusive diagnosis.

Geneticist Dr Susan Huson, from St Mary’s Hospital, Manchester, is determined to identify Mandy’s condition.
While amputation is inevitable and Mandy still faces the biggest dilemma of her life, she’s pleased that some day there may well be a condition in the medical books named after her.

“It could be called Sellars syndrome,” she smiles.
“Then I’d go down in history.”

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