Battling a debilitating disease

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Alberto Friedmann, coach and team member of the US Martial Arts Team for the

Peace Games World Championships, leads a class at Southern Illinois

University ville on Wednesday.

( Carson/P-D)

Alberto Friedmann is swiveling his left leg as he demonstrates a side hook

for his martial arts students.

" It's quick, " he says, as he kicks, first at waist level, then at the head

of a student.

The speed of the movement shows why he will join the U.S. Martial Arts Team

in Barcelona, Spain, in June. But it belies the chronic joint pain and

fatigue that he suffers as a victim of Ehlers-Danlos syndrome.

Two or three times a month, he is forced to teach martial arts classes from

a wheelchair.

The disease frequently causes Friedmann's bones to pop out of joint. In

fact, Friedmann typically pops his ankles back into joint before he gets out

of bed in the morning. He has had his right shoulder rebuilt twice by

surgeons. Both knees have been redone along with his jaw, and he is awaiting

surgery again on his right knee.

" The whole thing is mind over matter, " says Friedmann, who lives in

Highland. " If you don't mind, it doesn't matter. "

Friedmann says he is convinced that his martial arts training, far from

aggravating the disease, is what keeps him walking. Friedmann, now 35, says

he was supposed to be confined to a wheelchair a decade ago.

He has had to give up sparring in competitions and instead focuses on the

forms competitions, in which participants must follow a series of prescribed

moves.

He has a demanding schedule as he prepares for the Peace Games World

Championships in Barcelona. He will both compete and coach. Besides training

with his team almost daily - seven will join him in Barcelona - he is

pursuing a doctorate in physiology at St. Louis University. He wants to go

into medical research. His focus: Ehlers-Danlos.

" I figure if I was going to research a disease, I may as well research

mine, " he said.

His fiancee, Karly Oestringer, who also suffers from the syndrome, met

Friedmann at a conference where he was a motivational speaker. Both her

children also suffer from the syndrome.

She says that one of the most unusual aspects of the disease is that such

everyday tasks as putting milk in a refrigerator can result in a dislocated

shoulder. Those who have the syndrome, she says, must learn to do tasks in

such a way as to minimize the strain on the joint. Still, the worst thing

may be the fatigue.

" You feel like your soul is being sucked out of you like a straw, " she says.

The syndrome is caused by a problem with collagen that weakens the body's

connective tissue. About 50,000 Americans are believed to suffer from the

disease.

McCluskey, executive director of the Ehlers-Danlos National

Foundation, says Friedmann has become one of the organization's most popular

conference speakers.

" He's an excellent communicator to people of all ages, " McCluskey said. " He

has a knack for getting people to do things they wouldn't normally do and

feel a lot better about themselves afterward. "

Friedmann's team includes Hynes of O'Fallon, Ill., Skirball

of Granite City, Swiecicki and Zach Dupureur of Highland and

Bray, McEldowney and Traylor of Glen Carbon.

The team members are awed by Friedmann's commitment to the sport.

" It's the will to do it, you know, " says Dupureur, 14. " It's the mind-set. "

[Guest guest]

" You feel like you soul is being sucked out of you like a straw "

This is a perfect quote for how I feel most of the time.

[Guest guest]

" You feel like you soul is being sucked out of you like a straw "

This is a perfect quote for how I feel most of the time.

[Guest guest]

" You feel like you soul is being sucked out of you like a straw "

This is a perfect quote for how I feel most of the time.