Formula 1 auto races such as the Monaco Grand Prix have both a finish line and a time limit – if no one crosses the finish line within the allowed maximum time, the race is over.
In order to cross the finish line before reaching the time limit in the race to find a cure for Jenny, WE NEED YOUR HELP NOW.
Please scroll down to the blue side bar: "Am I a comparable?" This list outlines the characteristics that Jenny's doctors consider most important to identify other cases that may hold the clue to diagnosing her mysterious ailment - and finding the right treatment to reverse her frighteningly fast decline.
If you know of a potential comparable, please contact us right away at jenjensfamily@gmail.com.
But, even if you don’t know of a possible comparable case, you can still join Team Jenny and accelerate our race for a cure by getting the message about the search for comparables to as many people as possible, especially doctors who might have seen such a patient. Ask everyone to send the link to others, and seek their assistance as well. Together, we can work miracles.
Here is a suggested message for you to use in contacting others about the race to cure Jenny:
Hi,
Jenny, a 14-year old girl, was stricken suddenly with a debilitating illness a little over one year ago.
If you click through to the blog (http://jenjensfamily.blogspot.com/), you’ll see that some doctors suspect she has a rare form of ALS. There is also a possible link to the HPV vaccine (her third Gardasil injection occurred not long before her family began noticing the first symptoms of her illness), but doctors are not sure whether Gardasil played any role in Jenny’s illness.
We are desperately looking for two things:
1) Other cases that might be comparable to Jenny’s. Please read the sidebar in blue (“Am I a Comparable?” http://jenjensfamily.blogspot.com/). Do you know of anyone who might fit the description?
2) Any doctors you know who might have come across cases like Jenny’s in their practice. Can you help get the word to doctors around the world?
The cause of Jenny’s illness remains a medical mystery. Finding relevant comparables – fast – could help to solve that mystery and thus provide a crucial clue to finding an effective treatment.
Time is of the essence because Jenny is now a quadriplegic and is struggling to breathe. Therefore, Jenny’s family appeals to you to bring any potential comparables to their notice by sending an e-mail to jenjensfamily@gmail.com.
Jenny was a 15-year-old girl who lost her battle to a rapidly degenerative neurological disease on March 15, 2009. To save other Jennies, please sign the VAERS petition at http://www.thepetitionsite.com/1/oneclickonelife
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DISCLAIMER: This website has NOT authorized all links to it from other websites that reference it. Photographs appearing on this site may NOT be reposted or published without express written consent of Jenny's family.
Am I a Comparable?
To aid in finding a cure for the disease that took Jenny's life, we are still collecting information on 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. 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.
(6) It would also be of interest if the patient had both muscle weakness and pityriasis lichenoides (a rare skin condition thought to be auto-immune in nature).
But, we would like to hear about anyone diagnosed with juvenile-onset ALS or motor neuron disease, especially females with rapidly progressive weakening.
It is not necessary for a potential comparable to have each and every one of these attributes. But, when communicating about a possible comparable patient, please let us know which attributes that patient has in common with Jenny's case and any other potentially relevant information about the patient’s case history, family medical history, etc. Contact information for a physician familiar with the patient’s case would be especially helpful.
(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. 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.
(6) It would also be of interest if the patient had both muscle weakness and pityriasis lichenoides (a rare skin condition thought to be auto-immune in nature).
But, we would like to hear about anyone diagnosed with juvenile-onset ALS or motor neuron disease, especially females with rapidly progressive weakening.
It is not necessary for a potential comparable to have each and every one of these attributes. But, when communicating about a possible comparable patient, please let us know which attributes that patient has in common with Jenny's case and any other potentially relevant information about the patient’s case history, family medical history, etc. Contact information for a physician familiar with the patient’s case would be especially helpful.
5 comments:
As the mother of a 4-year-old daughter, my heart breaks for you. In hopes of getting the word out about Jenny, I've added a link to your blog from mine. Since HPV is a focus of my blog, I hope that my readers might be able to help you find comparable patients.
Praying that you find a cure for Jenny, Adina Nack (www.adinanack.com)
I'm so sorry to hear about Jenny. I have CIDP and receive IVIG monthly. Have you gone to www.gbs-cidp.org for information? They're a huge help and have so much knowledge about IVIG. I will be praying for Jenny and will check back soon.
Many blessings,
Kristen
www.cidpandme.blogspot.com
Has she been checked for neurological Lyme disease? This can mimic ALS. You need an ILADS Lyme literate doctor and Western Blot test from Igenex labs. More prevalent than you think.
My prayers are with you all.
Gail, Ft. Lauderdale, FL
so sorry to hear this about you my daughter has been very healthy all her life til she had the hpv shot after she has been diginosed with lupis ra and rynaunds2 she gets very fatigue has joint pain sometimes cant open things on her own hands turn purple numb and tingerly she gets very fatigue weak my heart breaks because its hard to see my daughter in pain when my children hurt i hurt i was never told that the shot came out in 2006 because i would have never gotten the shot she said the same thing but we were never told that it came out that soon from her pedi but she said mom i took my daughters advice and took the shot now look i have a disease that could kill me and i have to live in pain for the rest of my life we go to children hospital to see ha ra doctor and have her blood drawn cause she is on 4 different meds he told me that he has had girls come in there with similar problems after the shot i believe it was the shot and it was too too soon and not studied enough they dont care as long as they get the money this world is all about the money i will pray for you and my daughter and other girls affected by it my heart breaks every day im even depreesed about this whole thing she is too she is 18 years old and cant live a normal 18 year old life like her friends but i will keep you and your family in my payers god bless you
the best of luck
michelle and my daughter laura
I have a daughter that has recently developed some sort of neuromuscular disorder. She was healthy, walking, running and able to jump until a few months ago. Several months ago she received her last injection of the HPV vaccine. MOTHERS PLEASE LISTEN AND CONSIDER IT VERY WISELY BEFORE GIVING THE HPV VACCINE TO YOUR YOUNG DAUGHTERS. ALSO IF YOU HAVE A CHILD WHO HAS ALLERGIES/ASTHMA OR YOU THINK THEIR IMMUNE SYSTEM MAY NOT BE STRONG AS YOU'D LIKE IT TO BE!
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