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What! Meet The Girl Whose Body Is Turning Into Stone (Video)
Jun 3, 2020
At just 23-years-old Carli Henrotay’s mobility is already severely restricted: she can’t raise her arms above her head and uses a wheelchair to get around; while her jaw only opens a few millimetres. Carli has Fibrodysplasia Ossificans Progressiva (FOP), which causes muscle and connective tissue to slowly change into bone, in effect growing a second skeleton.Also known as the disease that 'turns people to stone', FOP has a life expectancy of 40 and there are currently only 800 people worldwide known to have the condition.
Carli said in an interviewe: “FOP is a one-in-two million disease, although there is evidence that it looks a little more than that but the number publicised is one in two million and there are around 800 known cases in the world right now.
“FOP mostly affects me in a couple of different places; my jaw is locked and I have less than 2mm of opening so it makes it harder for me to eat or talk and project my voice. My shoulders and neck are also locked, which hinder me from doing my hair or driving. And my hip is also locked which is why I walk with a limp or use other mobility aids just because I can’t walk that long a distance.FOP causes a lot of pain. I never know how to answer the question ‘on a scale of 1-10 what is your pain?’ because I live every day and every moment in pain. I am lucky that I have such a high pain tolerance.”Before her diagnosis, Carli was an active child; her happy place was a swimming pool and she liked nothing more than to be outside running around, whether it was playing soccer or T ball. All of that changed though when doctors told Carli’s parents their daughter had a rare and progressive disease. Cari said: “I was diagnosed with FOP at five and a half so I was lucky enough that I got that normal childhood. But at the same time I don’t remember life without FOP so I have all the memories of the normal childhood but without remembering what it was like to function like that."
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