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Gene-therapy hope for East Lancashire woman with rare growth syndrome
A WOMAN battling a rare condition in which she has 17-stone legs is hoping a new gene therapy will reverse the growth.
Mandy Sellars has a condition similar to Proteus Syndrome, the same condition that affected ‘Elephant Man’ Joseph Merrick, which causes skin overgrowth and and abnormal bone development.
But the 38-year-old, who is originally from Bacup and now lives in Huncoat, is undergoing revolutionary gene therapy in Cambridge which she hopes will stop her legs from growing and even cause them to shrink back to a normal size.
She is to appear on a Channel 5 programme tonight which will document her progress and investigate the new treatment.
Mandy, who lives in Bolton Avenue, said: “I have been doing quite well since the doctor found the gene therapy and I started taking some medication that they think will work.
“I am a bit like a guinea pig and we want to see if the medication may help other people.
“I never thought it would happen in my lifetime so it is fantastic news.”
She added that she was the first person to be diagnosed with the rare condition and that there were only 10 other people with the same condition in the world.
Mandy had her left leg amputated at the knee in 2010, however the life-saving operation stimulated the growth and it started to grow back.
It swelled to one-metre in circumference.
Since the operation, Mandy has been house-bound, but said she hoped that if the therapy was successful, she would be able to return to volunteering for the RSPCA.
A Burnley fan, Mandy, who also has arthritis, said that even if the treatment was successful, she may not be able to return to Turf Moor to watch games as the cold makes her joints very painful.
She said: “I still love my football, I used to watch Burnley, but it is too cold for me these days. I prefer to watch on TV when they are on. We are just seeing what happens.
“If it works, I could stay on the medication for the rest of my life, but if it doesn’t work, at least there is research being done to tailor medications for certain overgrowth conditions.
“Things in the medical field have come a long way in the last couple of years, so it is all very positive.”
Shrinking My 17-Stone Leg will be shown on Channel 5 at 9pm.