Wednesday, March 18, 2009

Jenny’s Journey Ends: Gardasil Questions Remain

It’s impossible not to cry, reading that Jenny Tetlock, the impish 15-year old whose struggle with a mystery ALS-like disease is chronicled on the blog Jenny’s Journey, died on March 15th.

I first stumbled on the blog right after I’d hauled a carload of laughing, slightly obsessed young girls to their second viewing of the movie Twilight. To read that Jenny had had to make two attempts to see the movie just once broke my heart, and like so many other people, I returned to the blog again and again, hoping that someone smart, somewhere in the world, would crack her case.

Jenny’s struggle was especially moving not because of her parents’ private agony, but because of their measured public response. They made it very clear that they did not want Jenny to become “the poster child” for an anti-Gardasil outcry. What they wanted was for doctors and researchers to find the cause and cure, whatever it might prove to be, for Jenny’s devastating illness. But they also wanted them to take a possible connection with the HPV vaccine Gardasil seriously.

Jenny’s symptoms became apparent shortly after her third Gardasil shot when she was suddenly unable to clear a hurdle that the other kids in her class could clear easily. With startling rapidity she became a quadriplegic, unable to breathe on her own for more than a second or two.

“Despite over a year of intensive testing at several of the country’s top medical centers, doctors still aren’t sure what has caused Jenny’s paralysis,” reads a post on Jenny’s Journey. “Some (mostly neurologists) believe that she has an unusual, rapidly progressive form of juvenile ALS – the same disease that confines Stephen Hawking to a wheelchair. Others (mostly immunologists) think she may have a rare autoimmune disease that mimics ALS…her family hesitates to declare Gardasil the cause of her illness without scientific evidence, but some MDs at top hospitals see the connection as possible and even plausible.”

They appealed for people with similar issues, with or without the Gardasil HPV connection, to contact them. One such was Whitney Baird, who died last August at the age of 22, just 13 months after being vaccinated with Gardasil. Like Jenny she had had an autoimmune skin disorder and developmental delays as a child, and her condition also deteriorated extraordinarily rapidly, raising the possibility that Gardasil had triggered a reaction that had started killing off motor neurons.

Autoimmune diseases “arise in genetically predisposed individuals but require an environmental trigger,” according to the Lancet, and my posts about the autoimmune disease/ Gardasil connection (February 2 and 4) included this:

“As examples, Dr. Harper (Dr. Diane Harper, who was involved in Gardasil’s clinical trials) mentioned family history of motor neuron disease or autoimmune diseases, which could affect how the person reacts to the vaccine,” wrote medical journalist Zosia Chustecka. “She illustrated this point by saying: ‘Salt does not usually kill anybody, but for a person with congestive heart failure, it could lead to fatal pulmonary edema, so you could say that salt caused their death, as it was the last straw that broke the camel's back.’

There’s also the aluminum connection. A high incidence of ALS in the Western Pacific was linked to dietary toxins such as aluminum; research into a spike of possibly heavy metal-related ALS cases in Gulf War veterans is ongoing.

Jenny’s family notes that since going public with Jenny’s illness, they have found two other cases of ALS following vaccination with Gardasil (the families had not previously thought to report them to VAERS) and learned of two more possible cases. Five cases make two beyond the norm for this age group, and the VAERS system is notoriously fallible and under-used.

Jenny’s parents, quite rightly, don’t want to just throw her disease randomly on the HPV vaccine's doorstep. There may not be a connection at all, although there are certainly very reasonable grounds for suspicion and their questions deserve to be investigated.

Science can be loosely defined as “what we know so far.” The Tetlocks just want us to advance that knowledge a little.

Meanwhile, my heart goes out to Jenny’s family; losing a beloved child is utterly unimaginable. Thank you for your persistence and thank you for making us ask questions. I hope that you will find some measure of peace once we have answers.

And Godspeed, Jenny.

1 comment:

Anonymous said...

I am a nurse and I do not trust this shot. I reluctantly agreed to give my daughter the first shot but then despite all medical providers advise have decided that I feel it is not the right thing to do. I have no intention of giving any additional shots to my daughter. I personally do not believe that all information and danger regarding this shot is widely known and I also think there is alot of money invested in this medication.