FAIRFAX, Va. (WUSA) -- 9NEWSNOW follows up on a tragic case.

25-year-old Desiree Jennings from Ashburn, Virginia, suffers from Dystonia, an extremely rare debilitating disorder.

She claims it's because of a reaction to the seasonal flu vaccine. Doctors at Inova Health Systems and Johns Hopkins back that claim.

Many doctors, experts, and the Centers For Disease Control still say the seasonal flu vaccine is safe and recommends the general public get the shot.

There is no definitive research to prove that the seasonal flu can cause Dystonia but there's nothing to disprove it either. So rare, that many doctors 9NEWS NOW talked with, haven't even heard of such a reaction due to the vaccine.

9NEWS NOW dug deeper. The CDC says its Vaccine Adverse Events Reporting Systems or VAERS reveals there have been 5 reports since 1991 of people suffering from dystonia after a billion doses of seasonal flu vaccines were administered.

The CDC says this data has limitations including no proof of the cause and effect relationship, anyone can voluntarily report their adverse reactions, and cases can be under reported.

Many experts in the medical field say vaccines are our best protection. But tell that to a once healthy Jennings.

Jennings says, "After I got the flu shot everything went down hill from there."

Johns Hopkins and Inova Fairfax documented Jenning's symptoms and told her she suffered from an adverse reaction from the seasonal flu vaccine. Dystonia disorder affects her speech, walking and nearly every muscle in her body, symptoms that are irreversible.

Rachel Lynch with Inova Health Systems says, "A side effect like this is extremely rare. Why it happened? I don't know. Your heart goes out to somebody who is experiencing something like this but bottom line this is so rare, the majority would never experience anything like this."

Jennings says she still has a message for others.

She says, "I want people to look at me and know this could happen if you get the flu shot.

Inova Health Systems and the CDC say the seasonal flu vaccine is safe.

Lynch says, "Vaccine is the best form of protection and since we have the flu vaccine the general public should take it up. This is such a rare, rare occasion not something the general public would need to wonder oh i'm going to get the flu shot and then a debilitating reaction.

Jennings counters, "I never knew you could get neurological damage or what they originally thought I had which was Guillain- Barre Syndrome, a deadly auto immune disorder. If i knew those things I would've never taken the flu shot. I just thought you could get the flu that was it."

Guillain-Barre can cause paralysis and death. It can happen to 1 or 2 in 100,000 people.

The CDC says there can be bad batches of vaccines but Lynch says this year's lot has been problem free so far.

Written by Surae Chinn

9NEWS NOW & wusa9.com

www.wusa9.com/news/local/story.aspx