CHARLOTTE, N.C. -- The story of Desiree Jennings is unforgettable. She's the 25-year-old cheerleader who says a seasonal flu shot left her with a debilitating condition called dystonia.
It's a neurological disorder.
Since her story went public, bloggers in the medical community have been asking questions and drawing their own conclusions. Even those in the dystonia community have questions.
NewsChannel 36 talked with Rogers Hartmann, founder of the non-profit organization Beat Dystonia. She was diagnosed with it last year.
"Immediately, to me, as a patient and an advocate, it did not appear to be dystonia," said Hartmann.
Hartmann has shared her story on Oprah and the Today Show. She says when she heard Jennings' story, something just didn't add up.
"The story doesn't make a lot of sense to me," she said.
Not only because of the way Jennings' dystonia looks, she said, but how quickly she was diagnosed.
Jennings' received her seasonal flu shot in August and soon after, she had a diagnosis.
"Anybody with dystonia will tell you, you have to go through many doctors to actually get an accurate diagnosis," said Hartmann.
Generation Rescue, an organization that focuses on biomedical treatment, featured Jennings' story on their Web site at first. Then they removed it. But just this week, it was up again.
This time, it calls into question doctors who claim Jennings' condition may be a "psychogenic" disorder rather than a neurological one.
In other words, it's raising questions about doctors who say, "It's all in her head."
Hartmann also takes issue with linking dystonia to vaccines.
"To immediately come out and say I got a movement/brain disorder, an incurable one, from the flu shot, in my opinion, is irresponsible," said Hartmann.
A neurologist NewsChannel 36 talked with when we originally did the story said he'd never heard of the seasonal flu shot causing dystonia.
"I have not come across any link between a flu shot and dystonia," said Dr. Sanjay Iyer, director of the Carolinas Center for Parkinson Disease and Movement Disorders.
Jennings said she came to Charlotte for treatment. We called her to find out how those treatments went and what doctors she saw, but so far, no one has returned our calls.
Hartmann says she hopes Jennings gets the treatment she needs, but she doesn't want people getting the wrong idea about dystonia.
She worries the disorder is being used to tout a campaign to scare people about getting vaccinated.
