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Entries in Marfan Syndrome (2)

Friday
Jun242011

Ann Reinking Teaches Dance to Teens with Marfan's Syndrome

COmstock/Thinkstock(NEW YORK) -- Ann Reinking, famous star of stage and screen, is focusing on a cause that's close to her heart: the fight against the negative body image associated with Marfan's Syndrome.

Marfan's is a rare genetic disorder of the connective tissues. It can affect the bones, eyes and heart; people with Marfan's usually have limbs that are disproportionately long. Long perhaps, but appealing to a choreographer like Reinking.

Dance is "one of the greatest loves on my life," Ann Reinking told ABC News. "I just fell in love, that's all I wanted to do." So she set out to highlight the beauty of being different through choreographed dance, choosing to focus on accentuating the long lines and silhouettes of people struggling with Marfans.

Reinking was a Broadway darling, blending a spunky style of power and grace that made her a star on both the stage and on the movie screen, starring in "All That Jazz" in 1979 and in "Annie" in 1982.

She is also a gifted choreographer, winning a Tony for the revival of the play "Chicago" in 1996. Through all the bright lights and big stages, she feels most accomplished when she's teaching kids how to learn and love the art of dance.

Reinking produced a documentary called "In My Hands," about working with children of Marfan's Syndrome. In the film, she teaches dance to teenagers with Marfan's Sydrome, whom she calls "exquisite."

It is a cause that is close to her heart -- her son Chris was diagnosed with the rare genetic disorder 15 years ago. It is a painful disease, and those with Marfans can undergo countless surgeries to correct their spines and vision; they also must remain constantly vigilant that their hearts don't grow too large.

"I learned my entire life to deal with it," Chris Reinking, now 21, told ABC News. "I mean like, a giraffe is not going to call himself weird because he has four legs and a long neck. That's just how he evolved and lived his entire life."

Even for someone who has lived with Marfans as successfully as Chris, there are lingering questions and insecurities that creep back.

"When you're a teenager, you don't want to look different," Ann Reinking told ABC News. "So being very tall can set you apart, not being able to see very well can set you apart … and you just want to fit in. We all do.

"These kids [have] a look that is unique and really quite beautiful ... One of the good things about accomplishing something is that it helps your self-image of yourself," said Reinking. "The human spirit is the greatest thing on earth. To be a part of that, whether it is to have people forget their problems … we're all of a sudden tangible, right there, you can truly touch it, you can truly see it's there. That's the best thing for me."

Copyright 2011 ABC News Radio

Wednesday
May042011

Top Five Osama Bin Laden Health Rumors: Fact or Fiction?

AFP/Getty Images(NEW YORK) -- In the years between Sept. 11, 2001 and Sunday's raid, rumors swirled about Osama bin Laden's health.  Some even believed he'd died in an area so remote that the best intelligence could not find him.

ABC News asked experts who have researched and written about bin Laden to weigh in on five of the most widely circulated rumors.  Here's what they said:

Kidney Disease -- Likely False

"Despite the fact that we have all been hearing about his kidney problems and the need for dialysis, according to the intelligence people I've talked to in Washington, there was no evidence of a dialysis machine in the compound where he was found," said Mary Anne Weaver, author of Pakistan: Deep Inside the World's Most Frightening State.

The exclusive video obtained by ABC News inside the compound also does not show any evidence of dialysis equipment.  There were what looked like medication bottles, but a closer look at the video reveals the bottles contain petroleum jelly, eye drops, olive oil, sunflower oil, an antiseptic and a nasal spray.

Marfan Syndrome -- Likely False

Along with the rumors about kidney disease, Weaver said the one about bin Laden having Marfan syndrome was also widely circulated.

Marfan syndrome affects the connective tissue that supports tendons, ligaments, heart valves and other parts of the body.  If it attacks the heart or the vessels of the heart, it could cause an enlarged heart or torn vessels.  Those with Marfan syndrome might be be tall and thin; have long, curved fingers; vision problems or no symptoms at all.

"The CIA suspected bin Laden had Marfan syndrome, but then the guy who briefed me on this said the information was negative a few months later," said Weaver.

Enlarged Heart and Low Blood Pressure -- Both Likely True

Weaver said officials told her bin Laden had an enlarged heart, and she reported that in her New York profiles of the most wanted terrorist.

"It was a fleeting mention by intelligence officials," she said.

Weaver also said she heard bin Laden had low blood pressure, but she never thought it was a serious condition.

Arm Injury -- Likely True

Experts say bin Laden was very likely injured in a 2001 battle in Tora Bora, the complex of caves in Afghanistan where U.S. forces believed members of al Qaeda were hiding.

"It does seem he may have been injured with shrapnel in Tora Bora," said Kenneth Katzman, a Congressional Research Service expert on Afghanistan.  "After his escape, he wasn't able to move it much."

In one of his earlier videos, bin Laden appears to be immobile on his left side, but Katzman said that his injury seems to have healed based on the viewing of subsequent videos.

Copyright 2011 ABC News Radio







ABC News Radio