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February 28, 2009


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That's a great description, OSM. I think you and Laurie did a good job with your Rare Disorder Day posts.


Like anyone except the people with rare disease's and the family somtimes care. As the mom of a ehlers,chiari, cci, severe dysautonomia child I wish more would care so they are labeled psych and me a muchashen mom
PS- Great info, I think TCI is on the beginning of the right path
Facebook:Linda Tupler Simmons

Quirky Mom

Just catching up on my reading...

This is a very interesting and informative post. Thanks. :)

Your mention of tethered cord got my attention because my niece had a tethered cord that was surgically corrected when she was 12(ish). Her Mom has EDS, but supposedly no Chiari (I think she's waiting on a second opinion). Anyway, it's interesting how everything seems to be linked...

Lisa Moon

The part that really kills me is the Damn Rules; I'm soooo sick of them, having heard enough of that for my own disorder. What, you have 9 out of 10 symptoms, but missing this ONE? Well, nope! That's obviously not you!


Just goes toward the theory that doctors are far too often NOT VERY SMART; if it doesn't fit into their checklist, the box of definition, then that's not the answer... which means worse, you're generally not getting any kind of treatment.

Grrr, the frustration!

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