14 year old with paralysis

iVillage Member
Registered: 02-24-2008
14 year old with paralysis
7
Sun, 07-20-2008 - 3:49pm

I am new to your board and wanted to spread the word about the following case and ask for the help of members of this board:

I am on a nonprofit board with the mother of the young woman, Jenny, who has been experiencing advancing paralysis for the last year and is now quadraplegic due to an unexplained medical condition (possibly juvenile onset Lou Gherig's Disease (ALS)). The condition MAY be tied to receiving the Gardasil (HPV) vaccine. Her family is looking to spread the word about her case in order to find:
1. comparable cases
2. doctors willing to review her case
They are hoping that comparable cases in particular could give her some hope for treatment.

You can read their blog here:
jenjensfamily.blogspot.com
And here is a brief on her medical history: http://www.jentet.com/pub_history.html

If anyone who reads this could send out the message about the blog and the family's search for comparable cases (they have a sample e-mail on the blog ready for use), it would be appreciated. As mentioned repeatedly on their site, Jenny is not doing well and they're desperately searching to see if there is anything to be done to stop the advancement. Jenny's an amazing young woman.

I want to make it clear that the family is not at all certain that Gardasil was what triggered the onset of the paralysis. This is a very well educated family (mom is a professor at UCBerkley) and they are very careful about NOT putting the blame for this on Gardasil. The timing of the vaccine and on-set of the paralysis are suggestive of some kind of link, however, the factors may be complex. It may be that she was genetically predisposed in some rare way due to other autoimmune issues, etc. Their concerns about the vaccine and lack of response from the FDA is on the June 22nd blog and is worth reading.

Thank you in advance for taking your time on this!

iVillage Member
Registered: 12-14-2005
Sun, 07-20-2008 - 5:59pm
Has she tried posting to the "Vaccinations" group on yahoo?





iVillage Member
Registered: 02-24-2008
Sun, 07-20-2008 - 7:46pm
I don't know - I don't believe so. Should I look it up and post there?
iVillage Member
Registered: 12-14-2005
Mon, 07-21-2008 - 11:05am
I emailed you through your profile. CYE :)





iVillage Member
Registered: 02-24-2008
Mon, 07-21-2008 - 1:50pm
This is not intended to be spam, this came from interest on another board in this little girl's story. Apologies for asking for a response to it.
iVillage Member
Registered: 12-14-2005
Mon, 07-21-2008 - 1:52pm

I did not think it was spam - did you get a response from someone saying it was spam?

No need to apologize :)

I really think you should post it to vaccinations on yahoo - several people on that group have lead others to help in similar cases.






iVillage Member
Registered: 02-24-2008
Mon, 07-21-2008 - 2:07pm
I got a response from iVillage saying it was spam and though I disagree, I figured there was a rule I haven't read in a long time that I violated. Glad you don't think so. This is very real and important. I will post on Yahoo. Thanks much for your thoughts!
iVillage Member
Registered: 06-05-2008
Mon, 07-21-2008 - 3:43pm
I think it has been posted on Vaccinations in Yahoo as I've seen this story before. More than once actually.