Forced to move most of his life in a wheelchair 23-year-old girl suffers from a rare genetic disease — fibrodysplasia. Muscles, tendons and ligaments Carly Henrotay from Missouri slowly “calcify”, turning in bones: it literally grows a second skeleton.
Carly told Barcroft TVthat such as it is — one person in 2 million, although the statistics probably understated. Only in a world with such disease, there are about 800 people. If not treat fibrodysplasia or “Stone man Disease”, the patient usually lives about 40 years. With age, the disease progresses.
In his 23 years Carly is severely restricted in the movements. The girl can’t raise arm over head, bend at the waist and stand up straight on both feet, due to the joints that are blocked lost elasticity of the tendons. Her back is practically one big bone and jaw barely unclenched a few millimeters. She is forced to move in a wheelchair because she can no long walk on her own.
“Shoulders and neck almost motionless, making it difficult to do my hair or drive a car,” says Carly. “Lois brings a lot of pain. I don’t know how to answer the question “what power do you have pain on a scale from 1 to 10,” because every day and moment of my life feel the pain.”
Carlie was active, happy, and carefree child. Running, like all children, loved to swim in the pool, to play football. And then her parents found out about a rare disease that progresses slowly. The girl was diagnosed at the age of 5 years, the characteristic symptom on the feet of the child the thumbs up was significantly shorter than the others.
To provoke the progression of the disease, every little thing. In the case of Carly, the impetus was the fall of my chair. On the back our daughter had multiple seals. In fact, where the body starts the normal inflammatory process that begins to grow bone tissue. So people who turn into “stone”, at the same time incredibly fragile. Any injury leads to deterioration.
Parents Carly did not protect his daughter from the usual active life peers, and she is grateful. Carly learned to enjoy the small victories. Yeah, it doesn’t get in the football team, but hit the ball somewhere close to all on the field. When classmates ran the mile, she was jumping rope with a friend.
She learned to accept myself not as a person with disabilities, and how a particular girl.
Carly tries to be as independent as possible with the disease. She removed the back teeth, it was easier to eat. To see who he talks to, the girl learned how to strike a pose of a Flamingo. Recently she has moved to her boyfriend Billy, whom he met in high school. Girl afraid of big changes, she’s worried, but determined, because I believe: disability is not the end.
“I am certainly sad that the FOP took big part of my life, but I’m trying not to dwell on it, just can’t change.
Definitely disappointing that you cannot play sports, drive a car, but I always try to find something good, remember what I have and grateful for it.”
Today there are no guaranteed ways of prevention and effective treatment of FOP. All the drugs are under clinical trials. The gene whose mutation leads to the development of the disease, found in 2006. McKay’s laboratory at the University of Pennsylvania — the world’s only working in precisely fibrodysplasia. In Philadelphia, San Francisco and Paris are now undergoing the first clinical trials of the drug.
Rare disease gradually turns muscle girls of USA dice updated: May 28, 2019 author: Anastasia Belskaya