Dysautonomia (Autonomic Dysfunction) Community
Dysautonomia book - a patients story
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Dysautonomia book - a patients story

For all members who are on facebook (or not), I have found this page about a book written about having dysautonomia - one sufferer tells her story.  I have not read it yet, but I am in the process of ordering it.  The author is a fellow sufferer and is trying to raise awareness of this condition.  She is also trying to get US programmes to do a feature show to raise awareness.

If anyone is interested below is the link to the page:

http://www.facebook.com/inbox/?ref=mb#/pages/Dysautonomia-book-God-Needs-Me-Living-With-Dysautonomia/192138871967
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She also has a group on there, The Faces of Dysautonomia, for people to share personal stories, etc., if anyone is interested in checking that out you can find it by searching on FB.  (I think if I post a direct URL to group there it'll automatically get blocked so rather than try and have it ****ed out, I'll just leave y'all the name and I'm sure those who use FB know how to find groups by name.)

I've only heard about it so far too, but would love to hear reviews here from those who are first to get their hands on it whenever people do get done reading it.
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I am a member of the above group and yes it is okay, there is also a group on fb called The fight against POTS which is also okay.  There are also a yellow wiggles page on there!!!

I like reading these pages and they are supportive for their members but, personally, I feel more at 'home' on here!!! xx

Wishing you all a very Merry Christmas and a great New Year x
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