By Mary Kearl
You may have heard news reports about 25-year-old Desiree Jennings, the girl with the severe reaction to the seasonal flu shot. Her symptoms — the inability to walk forward, but the ability to run forward and walk backwards — even appeared as Google Trends, with searches related to her condition. Some believed it was all just a hoax. Her story is garnering celebrity attention, too — Generation Rescue, the organization founded by Jim Carrey and Jenny McCarthy to raise awareness about health and safety issues related to vaccines — has reached out to support Jennings.
The Centers for Disease Control (CDC) advises against getting a flu shot if you’ve ever had a severe allergic reaction to eggs or to a previous flu shot. Additionally, if you have a history of Guillain-Barré Syndrome — a condition which includes symptoms of fever, nerve damage and muscle weakness — that occurred after receiving influenza vaccine, you shouldn’t get the seasonal flu shot. The risk of “serious harm” or death from a flu shot, the CDC’s Web site explains, “is extremely small. However, a vaccine, like any medicine, may rarely cause serious problems, such as severe allergic reactions. Almost all people who get influenza vaccine have no serious problems from it.”
Jennings, a Northern Virginian and AOL Employee (Full disclosure: This reporter and Desiree Jennings have never worked together before this interview.), who was healthy, training for a half marathon and a Washington Redskins Cheerleader Ambassador preparing to become a cheerleader, never suspected the health complications she is living with now. She is suffering from acute, viral post immunization encephalopathy and mercury toxicity with secondary respiratory and neurological deficits, which she believes is the direct result of the seasonal vaccination she received from her local grocery store chain in August 2009.
Initial reports and diagnoses indicated Jennings had dystonia, a neurological disorder characterized by involuntary muscle contractions that are sometimes painful. But, as of the most recent interview, Jennings’s treating physician believes she has acute, viral post immunization encephalopathy, or a disease of the brain that alters brain function or structure and can include memory loss and personality changes.
In an interview with AOL Health, Jennings, she explains her diagnosis and how her life is forever changed. Watch the video below to hear Jennings talk about her condition.
AOL Health: How were you feeling before you got your seasonal flu shot this year? What motivated you to get it?
Desiree Jennings: I was feeling great, very strong and healthy. I had just started training for a half marathon and was up to about seven miles by the time I went to get a flu shot.
I was motivated by a health program at work that rewards employees for doing health-smart things like working out, getting your cholesterol checked and receiving the flu shot each year.
AOL Health: How did you feel in the initial hours and days after receiving it?
Jennings: After [getting] the shot on August 23, with the exception of a sore arm, I felt fine over the next nine days. On day 10, and on my two-year wedding anniversary, I became very ill with a fever, painful body aches and nausea. From that day forward, everything quickly went down hill.
AOL Health: Can you describe your symptoms and some of the “workarounds” you’ve found helpful in overcoming/minimizing them?
Jennings: The symptoms started with the inability to talk and walk normally. At first, the walking and talking were manageable. Most of the time I could use sensory tricks [such as] touching my chin to talk or touching my left leg to walk, or walking backwards/sideways. But, as each day passed the sensory tricks slowly began to stop working as did the backwards/sideways walking.
That is when I began to notice that stimuli, such as a loud noise, bright lights, reading, or even eating, would worsen the symptoms and throw me into violent convulsions. The symptoms continued to worsen and my health deteriorated even further to the point where I could not move my tongue to eat without going into a convulsion or seizure.
AOL Health: You’ve been very public about your symptoms and what happened to you since taking a flu shot. Why has that been important to you?
Jennings: I am a very open person to begin with and I believe that having that openness towards my symptoms and experiences not only helped me get answers to my questions and a diagnosis, but will hopefully help educate and provide hope for other people in similar situations.
AOL Health: There have been some rumors online about people wondering if your symptoms and one of your initial diagnoses, dystonia, have all been a fraud. How have you reacted?
Jennings: I have been appalled to say the least. I have even received threatening e-mails from another well-known person suffering from dystonia. I have never heard of the disabled harassing the disabled.
I was a couple months away from a promotion at work, had just made the Redskins Cheerleader Ambassador team, was celebrating my two year wedding anniversary and had recently paid off all credit card debt and car loans. My perfect life has now been completely turned upside down. I am now on short-term disability, my paychecks have been cut, and will be cut again in a few weeks, and we are paying thousands in out of pocket medical costs. What incentive would a person have to completely change their life for the worse? I always told myself that if I ever were to become well-known it would be for something I accomplished, being the fastest runner or best editor and writer, not for being the most injured or a one-in-a-million victim. That is not an accomplishment, in my opinion, it’s a failure.
AOL Health: How has your work and home life changed since getting the flu shot?
Jennings: It has been turned upside down. I worry that I may never be able to return back to my career that I have cultivated, grown and cherished since I was 18 years old. And my home life is a frenzy of activity and stress — dealing with appointments, treatment options and media, all while simply trying to find normalcy in my new day-to-day activities.
AOL Health: Has your idea of your future changed?
Jennings: My idea of the future had definitely changed. All the things I worked so hard to accomplish and obtain now seem mundane and meaningless in the whole scheme of things. This injury has opened my eyes to so many things I was too busy to stop and pay attention to before. I have received so many letters and e-mails from people I have never met that speak of similar injuries and neurological issues and my heart goes out to each one of them. I wish I could just get better so I can help them.