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Mandy Sellars born with rare condition which balooned her legs to 10kg has told how they are finally shrinking, now weigh 6.5kg

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Mandy Sellars 41, suffers from a condition meaning she has a trim size-10 upper-body, but huge feet and legs,

For years doctors struggled to diagnose condition, finally cause identified as a mutation in the PIK3CA gene which causes an overgrowth of skin, bone, fat and tissue.

Forced to amputate left leg 6 years ago, after contracting septicaemia, but was shocked when the limb stared to grow back .

With new drug therapy  1okg legs are finally shrinking -down to 6.5kg and counting

Says “I am happy, not just because my leg is shrinking but because I am feeling more like me. I feel like I am really going in the right direction.”

mandy-sellars1Mandy Sellars

A woman whose legs grew to 10kg because of a rare disease has told how they are finally shrinking – and now weigh under 7kg. Mandy Sellars was born with legs and feet five times their normal size and has battled since childhood the unusual condition. It means the 41 year old has a trim size-10 upper-body, but huge feet and legs.

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The hospital visit for amputation turned out less than expected for Mandy Sellars

She was forced to have her left leg amputated in 2010 after contracting septicaemia, but was shocked when the limb stared to grow back .
Now, thanks to a pioneering drug, almost six stone has been shed off the former RSPCA volunteer’s lower body.
“It felt like a miracle, I couldn’t believe it when I lost a nearly a kilogram after just five months on the drugs, my legs were shrinking” she said.

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Mandy Sellars at 5 with mum June

“I am comfortable in my own skin, and proud of my condition and who I am.”
With doctors baffled about her condition, Mandy, of Lancashire, UK tried to live a normal life by going to school, college and studying psychology at the University of Central Lancashire while her legs continued to grow.
Able to walk and get around, life was a challenge for Miss Sellars, but she was mobile.
But soon she was warned amputation might be the only way to stop her legs from ballooning. With her legs weighing whopping 10kg, in 2010 Miss Sellars started to develop serious infections and amputation was the only option to stop them from killing her.
But months after going under the knife at the Royal Liverpool Hospital, doctors were shocked to see the leg had started to grow back – and within two years it was a metre in girth.

mandy-sellars7.jpgAlways upbeat Mandy in hospital, Spring 2010

“I was being measured at the hospital for a prosthetic leg they noticed it had already grown,” she recalled.
“I felt helpless. My body was taking control of my life and I felt like there was nothing I could do about it.
“It felt like in a short period of time I could become bed bound and my life could be over for me as my leg continued to grow.”
Two years later in 2012, after endless tests, doctors finally told Miss Sellars they believed her condition was caused by a mutation in the PIK3CA gene which causes an overgrowth of skin, bone, fat and tissue.

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7-year-old Mandy with dad,Rodney

“I was over the moon,” she said. “I never thought in my lifetime anyone would be able to find out what my condition was.
“I felt like I had been waiting my whole life for that diagnosis, just to know what it was that made me like I am.
“When I was offered a trial drug, to try and shrink the leg, I went for it. I had never been offered anything before that could stop the condition or shrink it.”

mandy-sellars6.jpgMandy Sellars – “I am happy, not just because my leg is shrinking but because I am feeling more like me

Over the past two years she lost 4kg from her legs and now, despite being house-bound, finds being mobile around her home much more manageable.
“My life has really changed,” she said. “It’s easier to get around, just simple things like getting on the bed and doing things for myself.
“I am happy, not just because my leg is shrinking but because I am feeling more like me. I feel like I am really going in the right direction.”
Miss Sellars continues to have clothes and shoes specially made because of her size and drives a specially-adapted car. Doctors are unsure if her legs will continue to shrink, but Miss Sellars is keeping a positive attitude.
“People say ‘I don’t know how you cope’, but I am making the most of what I am able to do and feel in who I am. I am proud to be me.”

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