14 DAY TRIAL // An 18-year-old student from Birmingham, UK, is suffering from a rare illness that could eventually “freeze” her body and turn her into a living statue.
Seanie Nammock is suffering from a crippling genetic condition that is slowly turning her limbs into solid stone. The cruel disease is called fibrodysplasia ossificans progressiva (FOB), also known as stone man syndrome, and it is so rare that it affects only 600 people in the entire world.
The stone man syndrome transforms muscles, ligaments and tendons into solid bone, which means a second skeleton is slowly growing on top of the original one, and the parts of the body affected by it gradually become solid like a statue.
Doctors discovered Seanie was suffering from FOB in 2008, when she fell off a trampoline. So, for six years, she has been struggling to live a normal life despite the fact that her back and neck are already frozen, and she is now unable to lift her hands above her waist.
Seanie looks like any other teenage girl her age, and you could hardly tell she has a second skeleton developing inside her. She wears make-up, nice clothes to look her best and likes to go shopping, but sadly, she cannot be totally happy because she fears her condition could get worse.
“We dread the thought of her second skeleton spreading to the lower part of her body. She will have a life-changing decision to make about whether she wants to stay in a sitting down or lying down position. Because that’s how she will be for the rest of her life,” her mother Marian explained, according to the Mirror.
It seems that even the slightest bump or blow to the teenager's body can trigger a painful growing spurt that adds to her second skeleton. So, every day is a new challenge for Seanie. She is constantly falling up or downstairs because she can’t hold the bannister, has problems with her balance and can't even have painkilling injections when she goes to the dentist.
Currently, there is no known cure for FOP, and the only treatment available to sufferers right now is taking over-the-counter painkillers.
Doctors at Birmingham’s Queen Elizabeth Hospital want to do something to change this situation, and they have initiated a £1-million charity campaign to set up Europe’s first Rare Disease Centre, where cures for rare conditions such as Seanie’s could be found.
Medical experts are aiming to develop cures for several rare conditions that collectively affect 3.5 million people in the UK.