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Woman Immobilized by Rare Disease

Woman Immobilized by Rare Disease

Airdate: 06/26/2012

She's a remarkable young woman.  

She's stiff as a board. Her legs are frozen straight.  Her head is permanently tilted. Monica Anderson can't move a muscle and her parents have to carry her around the house.

"It's like being in prison almost. I've been like this since I was 8. So it's very difficult," said Anderson.

On her own, Anderson is only able to take tiny steps with the aid of a cane.

She suffers from a rare disease that ossifies the muscles and tendons in the body and permanently freezes her joints into place.  

"It's just so hard to have a disease like this," said Anderson.

It's called Fibrodysplasia Ossificans Progressiva, or FOP. Only 700 people in the world have FOP—almost half of them are in the U.S.

"We're basically encased in bone, and we can't move," said Anderson.

The illness is also known as Stone Man Syndrome.

"I hate that word—turning to stone. We're people, we're not turning into a statue," said Anderson.

"It's very demeaning," said Anderson's mother, Lydia.

Anderson's parents, Lydia and John, who live outside Washington, DC, first noticed something was wrong when their baby girl's toes were bent.    

"We noticed the toe right at birth," said Lydia.

By the time Anderson was 10, her head was completely tilted to the side Now, her jaw is fused shut.

"Basically, that's just my lips that are opening. My jaws aren't opening at all," said Anderson.
 
Anderson can only eat processed food.  

"She feeds me good," Anderson said of her mother.

Anderson is spoon-fed by her mother. She also drinks from a long straw.  

Anderson's parents care for her 24 hours a day. Her father carries her 115-pound body around the house.  

"She's stiff. She's like a mannequin," said John.

Although her arms are immobile, she can use her left hand to text. She even uses the computer, using a stick to push the buttons.

At night, her mom has to place an oxygen mask on her face to help her breathe.
 
Anderson is now 43, and despite her hardships, her organs are unaffected by the disease. No matter what the future holds, she will no doubt continue to inspire everyone she meets.

While Anderson has said that the disease has made her a prisoner in her own body, Anderson refuses to be a prisoner in her home.

Anderson received a standing ovation from her classmates when she graduated high school and went on to earn a master's degree in Russian from American university.

She was the Maid of Honor at her high school girlfriend’s wedding and the two friends enjoy sipping coffee together at a local Starbucks. Anderson uses an electric powered wheelchair to get around.

Anderson has conquered many hurdles, but her biggest worry is her long term care as her parents age.

For more information on Fibrodysplasia Ossificans Progressiva, please see www.IFOPA.org.

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