- WUSA9 -
Desiree Jennings is trapped in her body. Intellectually she's all there, but her muscles are fighting each other. She's been diagnosed with dystonia, an extremely rare and debilitating neurological disease.
She says after taking the seasonal flu shot she witnessed her body's rapid decline. She doesn't know what else it could be but she has serious questions about the seasonal flu shot. The Centers for Disease Control cannot comment on her case.
Desiree was a healthy 25-year-old up until two months ago, working at AOL and as a Redskins cheerleading ambassador.
But her world has now been turned upside down.
Desiree has trouble talking and speaks in a staccato rhythm.
She says, "It's a battle every day because when I wake up I think it's going to be normal, but then I'm quickly reminded that's not going to be the case."
She says 10 days after getting a seasonal flu shot at a Reston grocery store in August, and on her second wedding anniversary, she got sick. First, she came down with flu like symptoms, then convulsions and blacking out.
She's seen more than 60 doctors. She says all of them were stumped until Johns Hopkins diagnosed her with dystonia. She believes her seasonal flu shot triggered it.
Desiree says, "Nothing else explains such a fast moving neurological damage. The medical hospitals ruled out everything, CAT scans normal, blood normal, MRI normal. The only thing that explains it is the shot caused the neurologic damage."
She says it is a strange disorder where muscles work against each other. She can't walk forward, only backwards. She can run, but she can't stop without help. She can whisper but has difficulty speaking. Noises can cause convulsions. Her resting heart rate is 90. When she runs her blood pressure dips to 58. She gets exhausted walking a few steps but she could run for hours.
Drugs such as valium and klonopin that make other people sleepy give her energy for hours.
Simple exercises become nearly impossible.
Desiree's husband, Brendan, says, "It gets worse everyday. It's heartbreaking to see."
Desiree says the disease is irreversible. Once she loses an ability it doesn't come back. She says there are only three ways you can get dystonia as an adult and they include head trauma, drug use, and poisoning. She says she has not experienced any of that.
There is no cure. One in a million are diagnosed with the disease. She says she just wants healthy people to talk to their doctors and weigh the risk.
While the Centers for Disease Control cannot comment directly on this case, they say they have no knowledge of a link between the seasonal flu shot and dystonia.