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Pocatello man battles rare disease

By Kylie Bearse
Published On: Nov 15 2012 01:11:03 PM CST
Updated On: Nov 15 2012 02:54:21 PM CST

Edmund Cook has a rare condition that turns his muscles to bone.

POCATELLO, Idaho -

Muscles turning to bone may sound unreal to many people, but for one man in Pocatello, it's everyday life.

Edmund Cook has an extremely rare condition known as Stoneman's Disease.

"I'm an author, I have done two of my own books," said Cook. "In math class in high school I designed a game called 'Dimension.' I'm a rebel rouser."

That's just the beginning. He even ran for mayor a few years back. His office is his couch.

"I went from one day being able to drive a car, play basketball, play ping pong, to that night, I tripped in the parking lot. The next morning my leg wouldn't bend," said Cook.

He is one of just 700 in the world who has fibrodysplasia ossificans progressiva. Over his lifetime, bones grow where his muscles are.

All the studies say there's no treatment. Surgery is not an option because the bones form from trauma.

But Cook is taking an unconventional approach.

"In 1992 I started taking massive amounts of calcium," said Cook. "We thought there was too much calcium, but we learned the body was starving for calcium. The disease has been pretty much, if not reversed, held at bay."

Amazingly, Cook can still stand and even walk with a little help.

"I'm a fighter," said Cook. "I'm a tenacious booger."

That won't be changing anytime soon. Cook is one of 10 kids and has a daughter of his own.

"If I need something they're there," said Cook. "They don't get called often, but if I need something they're there. We were taught to work."

Which is exactly what Cook does. From books to calling into radio shows, even building his own wheelchair ramp, Cook keeps busy.

"Perception is the key to success, no matter who you are or where you are," said Cook. "The world's not done hearing from me."

There isn't a lot that's known about FOP since there are so few cases.

The longest a person has lived with the disease is 72 years old. Cook plans to live much longer than that.

For more information on FOP, visit the International FOP Association at http://www.ifopa.org/en/what-is-fop/overview.html.

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