Educating the public

Last week, my not-quite-4 year old niece spent three days bere with me. Today, out of the blue, she told her mommy, “Aunt Cindy is ck because of Dercum’s.”

People are educated in ripples. I have a very large family, and circle of friends. I blog, as do many of you. (I put up a post today with a photo of the silly way we bruise so easily.) http://www.xanga.com/presby2

I’ve educated all of my family about Dercums, unto the third generation, including Maggie and her cousins. And her cousin Erik, who is much older, is going to be a father soon. This will be the fourth generation who learns about Dercums because of Aunt Cin. And I know it’s the same with you. I know we all feel that we’re getting nowhere in educating our families and friends, but while little Maggie doesn’t really understand what “Dercum’s” means, she does know it means when she comes to Aunt Cin’s house, we play on the bed, or she plays next to me the floor. No walks with Aunt Cin. No chasing games. But we still have fun - what a wonderful case in point! We’re still the same people, with different limitations.

I dunno, perhaps I’m not making any sense, but when Maggie’s mom left that comment on my blog just now, it seemed as though a light bulb went off in my head. Sure, it’s not as quickly as we’d like, but we ARE making headway!

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Educating the public and everyone we can is a great step in the right direction. Ignorance is such a distructive thing. I believe there are many more with Dercums who have no idea what they have or how to get any help just us at one time. And we still battle for help.

You go Girl!!!

Thanks, Brenna. I’m also emailing and posting the link to Dr Herbst’s website just about everywhere I can. I want them to understand the frustration, as stated by someone who’s studying this and other “fat” related conditions.

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