Teenager suffering from rare disease which will turn her into 'living statue'

Teenager suffering from rare disease which will turn her into 'living statue'

A teenager is suffering from a rare disease which will turn her into "living statue" as her muscles turn to bone.

By Kate Devlin, Medical Correspondent
Last Updated: 3:30PM BST 20 Apr 2009


L-R Seanie's Sister Sarah Nammock, Seanie Nammock, mum Marian Granaghan and Sinead Nammock Photo: BARCROFT

Already her arms have locked in a bent position at her waist and which means she can no longer reach up or dress without help.

Seanie Nammock, 13, from London, suffers from fibrodysplasia ossificans progressiva (FOP), thought to affect only 600 people across the world.

Even a slight knock can cause a reaction which triggers irreversible bone growth which lock her joints into place.

The teenager discovered she had the condition last year, when a minor accident on a trampoline caused her first flare-up.

Her mother, Marian Granaghan, said: "She had fallen on her back and it had caused a sore lump to form.

"It was huge, hard red and hot to the touch so I took her to the hospital to get it checked out."

But doctors could not diagnose the condition immediately.

"The drip she was on before she was diagnosed is probably what caused her left arm to lock," said Marian.

"To be told your daughter has one of the worst medical problems on the planet and that there is no cure is every mother's nightmare," she added.

Her daughter is determined stay positive about her condition.

She said: "I just said 'Oh well I'll have to just get on with it'.

"I'm still me so I'm trying to not let it make a any difference."

She added: " I don't get scared by looking at stuff on the internet as I don't automatically assume that something bad is going to happen to me. It might not, I like to stay positive."

People with the condition are often born with big toes shorter than the rest, which can be an aid to early diagnosis.

Tests are underway in America on a possible drug to halt the bone growth associated with FOP after doctors discovered the gene that causes the disease.

http://www.telegraph.co.uk/health/healthnews/5187872/Teenager-suffering-from-rare-disease-which-will-turn-her-into-living-statue.html