Getting the word out... social networks?

[earnestfamily7]

I have read a lot of posts over the past few months and many of them mention 'educating the dr.s" - Has anyone conidered putting posts on social networking sites (ie. facebook) similar to the ones I see everyday on my the facebook newsfeed... everything is there from Breast Cancer and Heart Disease - to Miscarriage/ Infertility - to Autism ... well you get the picture....

 

It would be a way to raise some awareness at least in your circles... and you never know who you might help.

 

A post could be something like... " P.A.N.A.D.A.S - a cute black and white bear to you - A MONSTER TO ME! P.A.N.D.A.S. (Pediatric Autoimmune Neurological Disorder Associated with Strep) has affected my child or a child I know. It takes over thier life in form of neuropsychiatric symptoms such as obsessions, compulsions, motor or vocal tics - all as the result of an infection. The onset is often sudden and severe - learn more go to http://www.latitudes.org/forums/index.php?showtopic=6265

 

What do you think?

[mrigsby]

I think the idea is great. I wish the doctors in my area were familiar with PANDAS. No one seems to have ever heard of it. I wish there was something I could do to change that. When I finally manage to find a doctor who is willing to get on board with us and Pandas and my son is finally receiving long term antibiotics, I think I am going to go to the local newspapers and have them do an article about it. NOt sure what else I am going to do, but I do want to do my part in my community in making people aware of this. My son has had every diagnosis you can think of in the last 6 years and one mental drug after another that has been basically useless, if I can keep one parent from having to go through all of that with their child it will be worth it.

[thereishope]

I am currently putting things together to distribute locally to docs, psychiatrist, and psychologists. My goal was ths month and I am hoping I can keep that. I contacted my brother in law who is a surgeon to proof my intro letter. I want it written in a way that will catch attention but not hurt the ego of doctors.

 

I have also contacted the school district about educating their counselors and psychologist and teachers. Waiting for a response. As for fb, there are some PANDAS groups on there but none as active as this. If interested, I can send you links to view. I also try to post on my personal wall info as it comes up. I also try to occassionally visit some OCD forums and scan for posts about children and post about PANDAS to them.

 

If you ever do come across "stories" regarding PANDAS, I try to comment and always add the clause...

 

For more info please visit www.pandasnetwork.org

 

PANADS Network does have a link to this forum.

[earnestfamily7]

I am currently putting things together to distribute locally to docs, psychiatrist, and psychologists. My goal was ths month and I am hoping I can keep that. I contacted my brother in law who is a surgeon to proof my intro letter. I want it written in a way that will catch attention but not hurt the ego of doctors.

 

I have also contacted the school district about educating their counselors and psychologist and teachers. Waiting for a response. As for fb, there are some PANDAS groups on there but none as active as this. If interested, I can send you links to view. I also try to post on my personal wall info as it comes up. I also try to occassionally visit some OCD forums and scan for posts about children and post about PANDAS to them.

 

If you ever do come across "stories" regarding PANDAS, I try to comment and always add the clause...

 

For more info please visit www.pandasnetwork.org

 

PANADS Network does have a link to this forum.

Thanks Vickie - yet send me the group names.... I applaud you for taking such an active role in you community to get the word out!