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Whitstable woman needs £20k for surgery to treat 'Elephant Man Disease'
12:08, 25 June 2018
updated: 12:25, 25 June 2018
By Nicola Everett and Ismail Khwaja
A young Whitstable woman who has been left unable to wear high heels by a painful condition that causes limbs to swell is hoping to travel to Germany for life-changing surgery.
Lipoedema is a tissue and skin cell disease most commonly known to affect the legs between the hips and ankles, but can also affect the arms.
It is often mistaken for obesity and is nicknamed 'The Elephant Man Disease' because of how large and disfigured limbs become.
Melissa Gimson, of Canterbury Road, was only recently diagnosed but is already at stage two out of four, and has been warned she could lose mobility in her legs.
She said: "I can no longer wear high heels. I no longer feel comfortable clothes shopping for dresses because my bottom half is bigger than my top half. And I can't exercise like I used to.
"I used to be a dancer and a cheerleader, and now I have trouble running or cycling or even walking long distances which shouldn't be the case for someone my age."
Surgery is not available in the UK and the 27-year-old student support worker faces having to raise up to £20,000 for treatment in Germany.
And it is a race against time, as in a year or two the operation may not work.
Melissa added: "Most doctors in the UK haven't actually heard of it, my GP hadn't heard of it.
"It's commonly misdiagnosed as lymphoedema, which is fluid retention in the legs - that's what my doctor initially thought, but then when they pushed down the legs and there was no fluid, they kind of no longer know what to do with you and it just gets misdiagnosed as being overweight."
The surgery is a form of liposuction which is still classed as a cosmetic procedure and not normally available on the NHS.
As well as fundraising, Melissa is hoping to raise awareness of the condition and call for changes so sufferers can be treated in this country.
"This is a painful, debilitating, progressive condition and the only way to treat it is to remove the affected cells. It’s not the same as getting liposuction just to remove fat.
"The condition will progress, there's no telling how quickly it will progress in each person. I’m currently stage two, stage three and four are a lot worse.
"The limbs become a lot more swollen, they become a lot more painful. Some people in stage four have completely lost the use of their legs because it’s too painful to walk because the rest of their body can’t support the weight of the swelling."
