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It__s not easy being Mandy Sellars. She has hugely outsized legs that make having a normal life nearly impossible.
People stare whenever she leaves the house, she needs a special car to get around and can__t work full time.
What__s more, her condition is getting worse and doctors say she needs an amputation so severe she won__t be able to sit up.
And she doesn__t even know what__s caused it.
But the cheerful 33-year-old from Accrington, Lancs, just won__t be told. She__s challenged medics__ verdict and has just got back from America where she went to find a new treatment.
And 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. _
It__s no wonder some people stare. Mandy__s legs are wider than the average man__s waist and heavier than most women.
Her left leg is five inches longer than her right and has a clubfoot, which has turned 180 degrees backwards. She says: __I weigh about 20 stone __ 15 of which are my legs._
She has never had a firm diagnosis, but it could be linked to Proteus syndrome, which causes abnormal skin and limb growth. John Merrick, the Elephant Man, is believed to have had it.
__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 has a specially adapted hand-controlled car so she can still get out to meet friends and go round for a coffee and a chat.
__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._
When Mandy was born doctors gave her a week to live.
Her left leg was three inches longer than her right, and both were out of proportion. No one knew what her condition was or how to treat it.
Despite the odds, Mandy proved everyone wrong and at 18 months she began walking.
__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 stabilisers 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, was horrified by 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 realise that they won__t always be here and have encouraged me to be independent, so at 19 I left to live on my own.
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__I was a normal teenager __ I went out drinking, clubbing and ended the night with a kebab._
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._
She talks to friends over the internet every day and is in the middle of writing a book about her life.
She even finds the energy to head to the local RSCPA rescue centre once a week to clear out the rabbit hutches.
But her health keeps getting worse.
She has suffered arthritis, deep vein thrombosis (DVT) and had a blood clot in her leg. She was paralysed 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._
So when a TV production company contacted Mandy and said it wanted to make a documentary about her life, and take her to meet US specialists, she didn__t hesitate to say yes.
In the US she met renowned orthopaedic surgeon Dr William Ertl and prosthetic whizz Kevin Carroll.
The pair has worked together on many challenging cases and Carroll famously made 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._
Extraordinary People __ The Woman With Giant Legs, next Thursday (August 21), at 9pm on Five.
Originally From Mirror.co.uk
