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Permalink Reply by Dave on July 19, 2009 at 4:24am

know ur stuff... and talk to whoever is spreading bad info... and ask where did they get that info from and is where they r getting there info from is a reliable source ...and be sincere in telling them that u dont feel its right to spread misleading info ...but know as much as u can about whatever u r confronting , it will help alot .....maybe they have been given bad info and just dont know any better themselves ...And remember not to be afraid to challenge someone just because of there status ...whats right is right .
hope all is well
Ciao

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Permalink Reply by Sickle Cell Warrior on July 19, 2009 at 7:59pm

In addition to what Dave said...create your own wave to counteract the negative propaganda. An example is from a city I used to live. There was a support group there, but it was geared more towards parents than the SCW themselves. The teens and tweens pretty much just sat in the meetings, didn't interact, while the leader talked about SCD like she was an expert.

I got everyone's info and hooked up the teens/tweens with a monthly event, seperate from the meetings. WE would meet up, play games, have fun, and talk about SCD. It wasn't formal and stodgy, and it was a open forum created to cater to the sickle cell patients' themselves.

I know this can't always be the case...I just counteract negative info with the right information backed by sources like NIH, Sickle Cell Foundation etc. My other plan is to get my paper...all the way to a PhD and then I'll be the Expert, with the schooling to back me up. How ya like me now snitches?

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