By Nicholas Graham
Desiree Jennings can whisper softly, but not talk loudly. She can run a 3K, but can’t walk 5 feet normally. She can move sideways and backwards, but not forward. Desiree can still hope and dream, but realizes that her life the way it was may never come back. Desiree is a “one in a million” person. Tragically so. She is “the one”.
Apparently, the one person in a million, according to the Centers for Disease Control (CDC), who may have developed severe and possibly life-threatening side effects from getting a seasonal flu vaccine seven weeks ago at a Safeway in Reston.
It’s easy to understand why Desiree felt compelled to get a flu shot. Warnings that this fall would see a harsh seasonal flu season, compounded by growing concerns about the impact of the new H1N1 ‘swine’ flu – have driven healthy people to get inoculated, and especially those in defined high-risk groups.
Then, the statistics: 36,000 die annually of the seasonal flu; 200,000 people will be hospitalized with the flu; and over 100 million seasonal flu vaccinations will be given. Already, since August 30, the CDC reports about 950 people have died from flu-associated pneumonia or flu symptoms.
Desiree, a young, healthy and active 25-year old resident of Ashburn, says she was not in a high-risk group, had no pre-existing, underlying health issues, and was not on medication at the time of her shot.
Since April, Desiree has also been a Washington Redskins “Ambassador” – a physically-demanding job that trains you to one day become a full Cheerleader.
As for the seasonal flu shot, she got it to earn ‘healthy living’ points for her work health plan that gives perks for each level of ‘wellness’ that is attained.
The shot in the arm itself, on August 23, was uneventful. Ten days later, Desiree says she got flu-like symptoms – fever, vomiting, weakness in her legs, and body aches.
On returning to work at AOL after Labor Day, she was even more fatigued. She passed out at work, and then again at home. Her husband, Brendan, rushed her to Urgent Care nearby as Desiree went into convulsions. She was immediately transferred to Loudoun Hospital, where she spent three days.
The doctors ran test after test, and asked question after question. She was screened for Lyme disease, Lupus, and other ailments. All came back negative.
Desiree proceeded to go back to Loudoun Hospital, then Fairfax Hospital, then Johns Hopkins in Baltimore to see specialists. None could give a diagnosis. She estimates she has seen 60 medical personnel since mid-September.
Desiree has seen her primary care physician, physical therapists, speech therapists, neurologists, neuropsychologists, psychiatrists, and a bevy of nurses.
Amazingly, it was her physical therapist at Johns Hopkins who provided the latest, clinical diagnosis as to what Desiree has: Dystonia.
While sounding like a fictional land from a J. R. R. Tolkien novel, Dystonia is a neurological movement disorder where sustained muscle contractions cause body jerks, and abnormal or repetitive movements. The disorder may be inherited or caused by other factors such as birth-related or other physical trauma, infection, poisoning, or reaction to drugs, particularly neuroleptics – according to the National Institute of Neurological Disorders and Stroke.
It has also received attention in a film by PBS called “Twisted”, and in news stories on MSNBC.
Dystonia requires the learning of a new way of living, and re-learning even the most basic routines. It’s also rare, and not completely understood. As for cures – none exists. As for treatment, it’s basically limited to minimizing symptoms of the disorder.
Desiree is in the process of trying out a cocktail of medications, to see what mix works. “Sensory tricks” also help manage the spasms, though she is still afflicted by a handful of serious seizures and convulsions, and 20-30 minor ones, every day.
In one incident weeks ago, as Desiree started to head into another gripping seizure while navigating the stairway inside her home, she slipped. As she began to fall, her husband Brendan leapt to catch her – in the process breaking his foot, and ensuring that as they trudge from doctor to doctor – he will do so with one leg in a heavy cast. Another burden.
To minimize the stimuli which cause convulsions, she often has to wear soundproof headphones around the house and listen to music; Coldplay often does the trick. Understandably, she eschews techno or rap. Without headphones, multiple stimuli – say, a phone ringing combined with loud TV noises – will send her into a seizure.
She also finds solace in posting updates on Facebook, along with short videos of her condition – many of which are startling. This has attracted offers of expert help from neurologists willing to take on her case. This social media platform has been her one-stop shop for communications, information, and support – always a click away and 24/7. It’s also free – and paperless.
Offline, it’s anything but paperless. At Desiree’s feet is a black, plastic accordion folder already bursting with health care documents. Getting bigger by the day.
It’s understandable how Desiree now feels about the seasonal flu shot. She – and her doctors, she says – are convinced it is what’s caused her alarming, adverse reactions. “Don’t get the flu shot if you’re healthy” and not at risk, she implores. She claims doctors at Fairfax and Johns Hopkins hospitals agree.
Dr. David Goodfriend, the Director of the Loudoun Health Department, has a different take.
While he sympathizes greatly with Desiree’s case, “we know in Loudoun if no one got vaccinated more would get sick, and potentially more would die”.
“There are always rare side effects,” Goodfriend says. “But seasonal flu is a major killer of otherwise healthy people.” He strongly believes that any risks associated with a flu shot is “outweighed” by the benefits it provides.
And, he practices what he preaches: Goodfriend got the seasonal flu shot in late September, and the H1N1 vaccine last week.
Desiree and Brendan have always had a kind of Prohibition policy on crying. But not a day in the past thirty has been ‘dry’.
“You realize your life is never going to come back the way it was,” Desiree says, looking out her kitchen window onto a Brambleton street scene. “My goal in life was to one day be a CEO. Now, I don’t know if I can ever return back to work”.
With a new dose of tears welling up in her auburn-colored eyes, Desire looks down, and says “every day for me is a struggle to even want to live.”
But she goes on. Even knowing she is – possibly, sadly – on the wrong side of being ‘one in a million’…