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awareness campaign- your thoughts?


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Hi everyone,

 

So, after realizing we're in the Pandas "family" for awhile, I've decided to put my skills to some use (hopefully :) My background is as a journalist/news reporter and pr/marketing. I've worked for other causes and never thought I'd be "pushing" a cause that my 4 year old is struggling with. But....that said, in order to start an effective awareness campaign (this one targeting parents), I could use everyone else's knowledge as I'm VERY new to this. If you can answer any of the below questions and/or would be interested in helping out, please IM me.

 

*The other awareness campaigns for Pandas have been: Pepsi Challenge (huge, and amazing accomplishment!), Pandas Foundation "got strep?". Another other's I'm missing?

 

*Why has the OC foundation not supported funding for Pandas research?

 

*Most of the other organizations websites that promote disorders that our Pandas children may exhibit, do not contain any info. about Pandas. Any idea why?

(i.e.: the ADHD, ADD, OCD, Tourettes)

 

*Any estimate how many children have been diagnosed with PANDAS?

 

*Estimate of potential PAndas cases (undiagnosed or misdiagnosed)? Someone said Swedo had put it at 5% of the pediatric population. Another article said 25% of the OCD population and another said 1 in 1,000 children could have Pandas. Any valid stats to present to the media?

 

 

Thanks for all your input and knowledge.

 

Darlene

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I believe those were the two national campaigns. Parents have taken it upon themselves to try to educate locally through mailings and such, but I think that's it for national.Luckily, specifically in 2010, PANDAS did get some national coverage just from news articles and being represnted at national conferences, but they were not any form of a campaign.

 

The IOCDF has been more helpful with PANDAS. Just last year, they did add the new, update PANDAS Fact sheet to their website and they are asking parents to write to them their stories and experiences for publishing. As for them not giving research money, I don't have an answer to that. One can ask the same of orgs that deal with autoimmune disorder or rare disease (even though we as a community say that it is not rare, just rarely diagnosed). To this day, NORD will not even list PANDAS nor do they return inquiries as to why.

 

AS for other orgs that deal with OCD, TS, ADHD, was there a specfic one you were referring to? Some websites that give info specific to those disorders list some PANDAS info. Luckily, if you do post info on PANDAS on things like their FB pages, at least they don't delete them. I think they worry (if that's the word) that they may insight panic in their community? Not sure. Hopefully, once the NIMH issues out their white paper and they make more of solid stance on it (besides the director post) maybe then more orgs will be more apt to post info. Again, no real answer here.

 

As for an estimation on PANDAS, who really knows. Yes, Swedo is cited as saying that 25% of kids with OCD may be actual PANDAS, but that doesn't include all the other disorders out there (bipolar, autism, TS, etc) and that number is probably much higher. Even adults with neurobiological disorders could be from undiagnosed PANDAS or PITAND, especially if they are treatment resistent. Also, with some PANDAS cases, who knows if it can morph into what some may call "regular OCD". My son had residual OCD with his third exacerbation. Who knows what it would have been like if he never had antibiotic treatment. Can't even think of that. Simply, the prevalance is not known right now. Even if there was a number, I don't know if I would trust it right now as many doctors still don't know how to diagnose or understand the complexity of it.

 

Sorry I couldn't be of more help.

Edited by Vickie
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