'Flamingo Lady' and Others With Uncommon Medical Condition Stigmatized

Aug. 6, 2010 -- A woman in the United Kingdom is known as "flamingo lady" because an uncommon and debilitating medical condition makes it impossible for her to stand on both legs.

Joanne Day suffers from dystonia, a neurological condition that subjects its victims to involuntary muscle contractions and spasms, according to the British Daily Mail newspaper. An estimated 1 in 1,500 people in the U.K. (about 40,000) suffer from dystonia.

Because of the form she has, Day's left leg stays bent up toward her chest, so she's forced to stand on one leg, as flamingoes do for reasons that are not fully understood.

Dystonia is somewhat more common in the United States. An estimated 1 in 1,000 Americans (about 300,000) have dystonia, according to the Dystonia Medical Research Foundation, which makes it more common than more well-know conditions such as cystic fibrosis.

There are about 13 forms of dystonia and, so far, there's no cure for the condition.

Art Kessler of Chicago, who has lived with the condition for years and was diagnosed when he was 10, is quite familiar with the contortions and the pain caused by dystonia.

"My foot turned in, and then it progressed to my leg, and then my other leg, then my arms and then my back," said Kessler, 42, who is the president of the Dystonia Medical Research Foundation.

"My back would arch, which would put a lot of pressure on my lower spine. It was painful to walk. I could stand up straight, but it looked like a had a board stuck up my back when I walked."

Kessler said he remembers being teased when he was a child.

"They called me names and stuff," he said. "Kids can be nasty. It was tough to deal with."

For people who suffer from other symptoms of dystonia, such as involuntary eye closures or a contorted neck, it's stigmatizing.

"The general public doesn't recognize dystonia," said Dr. Cynthia Comella, professor of neurological sciences at Rush University Medical Center in Chicago. "These people are seen as odd or weird."