Monday, July 7, 2008

Setting the Record Straight

This morning, the CBS Early Show ran a story about Gardasil, using Jenny as the example of a girl who may have experienced an “adverse reaction” to the vaccine. CBS contacted the family; we did not contact them. Family representatives emphasized to CBS’s producers Boxer and Bicknell that we do not want Jenny to become the poster child for the anti-Gardasil campaign and that it is by no means certain that Gardasil caused Jenny’s illness. Rather, our goal in making Jenny’s sad story public is to locate any possible “comparables” to Jenny – which could include girls (and even boys) who have not taken Gardasil, but who have experienced a rapid decline and paralysis that is resistant to the many kinds of treatment Jenny already has received. We are disappointed that the CBS on-air story did not mention the search for comparables and that the online version of the story merely suggests that “Jenny's father hopes a blog he started will prompt other teens with similar post-vaccination problems to come forward.” That is, at best, half the story: Jenny’s family needs to hear about any and all possible comparable cases, regardless of the apparent cause.

To set the record straight, and to get the information so desperately needed to help Jenny, we publish here the full statement that the family gave to CBS:

“The family believes that there may be a link between Jenny’s health and the HPV vaccination – at the very least, the timing of her third Gardasil injection (March 2007) and the apparent onset of symptoms sometime later in the spring of 2007 is suggestive. But, there is no medical consensus on whether this hypothesis is stronger than other possible explanations. A variety of hypotheses relating to the HPV vaccination remain in the running, and the family is concerned that these vaccine-related hypotheses have not yet gotten the full investigation required to accept or reject Gardasil as a potential explanation (in full or in part) for Jenny’s condition. The family has an understandable and strong desire that all such possibilities be thoroughly investigated immediately, as Jenny’s life hangs in the balance.

“The desperate need is to identify any ‘strong comparables’ to Jenny’s case, where a comparable is defined as someone (1) who has experienced rapidly progressive weakening and loss of the use of his/her limbs, (2) for whom the onset of the condition began before adulthood, and (3) for whom treatments such as immunoglobulin (IVIG), plasmapheresis, steroids and immunosuppressants such as Cytoxan have failed to halt the progression of disease. The comparable would be even stronger if (4) the individual were female rather than male (apparently, neurodegenerative diseases such as juvenile-onset ALS are much less common in females, which is part of what makes the nature of Jenny’s disease so mysterious). And, it would certainly be of interest if (5) the potential comparable had received the Gardasil vaccine (or perhaps some other vaccine with key similarities, such as an aluminum adjuvant) prior to the onset of symptoms.

“The cause of Jenny’s illness remains a medical mystery. Finding relevant comparables could help to solve that mystery and thus provide a crucial clue to finding the treatment that could save Jenny’s life. Time is of the essence because Jenny is now a quadriplegic and is losing the struggle to breathe. Therefore, the family appeals to your viewers to bring any potential comparables to their notice by sending an e-mail to jenjensfamily@gmail.com.”

13 comments:

Michael Lee Syring said...

Thanks for setting the record straight. Media can skew & distort things so much.
My family wished Jenny & your family the best!

jade13 said...

I pray your quest to find an answer for your little girl is found what ever the cause. May God Bless your efforts and your beautiful child.

Allison said...

I just heard about you through the CBS news story. I administer a program to provide free HPV vaccine in Missouri, and I check the news frequently for updates on the safety of the vaccine. I was shocked by your story, and I appreciate your clearing up their mis-quotations with what you actually said. I understand your reason to see the link, something I had not actually heard from anyone else's cases before. I will continue to follow Jenny's story and other cases of post-Gardasil vaccination illnesses. Thank you for making this so public. Increased awareness is absolutely necessary, and people need to be fully aware of the risks and benefits before taking any vaccine or drug. While we do not yet know the long-term benefits or downfalls of this vaccine, I believe it will prevent thousands of cases of cervical treatments, but I hope that intensive research continues to look for any adverse reactions and cures for those. Thank you again for your efforts, and I will pray for Jenny and your family.

Sara said...

Dear Jenny,
I read the CBS news article and then checked out your blog. I pray that the Lord gives you hope and encouragement to keep up your good spirits. Have you ever read anything by Joni Erikson-Tada? She comes to mind, because she also has paralysis and has written about her life. I do hope your family's quest for answers and help leads to some good things for you. - Sara

devybecca21 said...

Guillain-Barré syndrome

Check it out, it sounds very similar.

I have been told by friends that I NEED this injection. I think otherwise. I am starting to believe in natural medicine now rather than what we "should" take.

God bless your daughter, I will pray for her recovery.

Cathy D. said...

A friend of mine told me about CBS's report about the possible Gardisil link to Jenny's illness. She was highly concerned about the story after I told her what happened to my daughter this past weekend.
My daughter is 19 yrs. old and also just finished her final Gardisil shot in the series this past month. As she was driving, she felt a tingling in her right side of her face which went completely numb and swollen. She was terrified! The reaction went away after a couple minutes, but it came about out of the blue. I phoned her doctor, but she did not think it was an emergency situation! It happened again twice withing a 6-hour time span. I did not want to take a chance thinking it could be the start of a stroke or aneurism so I rushed her to the emergency. They had no definitive explanation thinking perhaps it was caused by stress or a facial nerve inflammation. They told her to take Benadryl if it happened again.
It is so ironic that this too happened after she completed the Gardisil series. I will continue to read your blog for any updates.
In the meantime, our family wishes Jenny and your family our prayers and hope for some answers!

Nati said...

Hi! In Brazil a big magazine published Jenny\s history, and I am here to give you support in this moment and say that I am gonna send some emails with the link of your blog to some brazilian friends to let this history be known...

Mitchell said...

Dear Jen and Family,

I applaud you for having the courage to come forward with your beliefs about the vaccination. And I believe there is a possibly a definite connection with your condition and the vaccination.

This is not the first time vaccinations have been suspected of causing harm. I have a son who has autism. I believe the thermisol (which is mercury) in the childhood vaccination MMR caused his autism. As do so many other parents of autism. Of course, the makers of the vaccine deny this.

So please continue your quest to find the answers! Do not let them get away with this! Others need to be fore-warned about the possible side-effects before receiving this vaccination.

Jen, my heart goes out to you. You are so young to have this happen to you. Life is not fair. And it is such a shame that you had to find this out at such an early age. Stay strong, sweetie!

To Jen's parents - Please keep your daughter's story in the media spotlight! And keep fighting to find the answers!

And please know that other parents (those who have children with autism) fully support you in your quest to find the answers behind vaccinations.

Donna
Richmond, VA

mary ann14 said...

My daughter received her 3rd vaccine on 9/24/07. In October she became chronically ill with uncontrollable nausea. She was hospitalized for a week in December and the entire month of January 08. She has just recently been diagnosed (in the past month) with gastroparesis and autonomic dysfunction. I saw this story on my local CBS station last night and am struck by the timing of the onset of my daughter's symptoms. What do you recommend as a next step to getting to the bottom of this?
My prayers are with your family. I know personally how difficult it is as a parent to stand helplessly by and watch your child suffer.

Ruxandra said...

Take a look here

http://www.springerlink.com/content/x457214811q62412/

and here
http://www.mothering.com/articles/growing_child/vaccines/aluminum-new-thimerosal.html

God be with you!

Deb and Jim 680 said...

Dear Jenny,

I am a friend and colleague of your parents and I've met you just once or twice. I heard that you were at Stanford hospital yesterday, which is right near where I work, and is where my daughter Dayssi is being treated for Leukemia. I wanted you to know that you are in my heart and in my thoughts as you are fighting this battle. In am so inspired by your grace and your courage. That goes for you too, Phil and Barb. I am in your corner.

Hugs, Deb Gruenfeld

nature_lover said...

Thank you for sharing with us! I have a very close family member with GBS. She just completed basic in the Army, few days later was completely paralyzed, in coma and could not breath on her own. How many vaccinations did she get? Tons! I would love to have my hands on her records with the military but they won't give them! She had many of symptoms three week prior to being total paralyzed all this should be on record also. Only 18 years old! It is people like you who come forward to tell their story that will make people listen, vaccinations kill! Your little Jenny to me sounds like she may have a sensitivity to other vaccinations from way back. All leading up to this big one. I truly hope you all find comfort knowing others have similar things from vaccinations. If only we could un-do what we consented to! We did not know though!!
Jenny girl please hang in there, you will over come this, many are praying for you!

ptphil said...

As Jenny's parents' know, my daughter, Sarah Beth, also had ALS at a young age, 21, and succumbed to the disease very rapidly, only 9months from onset to death. They also know that Sarah did NOT take the Gardasil vaccine. They are saying there COULD be a link with the vaccine, and there could be improvements in the reporting system regarding adverse effects of vaccines. It's amazing how ordinary people and news media distort facts and come to irrational conclusions. Sometimes I feel we're back in the Middle Ages, before the Age of Reason.