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Dysautonomia News Fall 2004


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Hi everyone!

The latest edition of Dysautonomia News has been published. I'd like to thank Pam Reichers and Judith Pettibone for their help in creating this newsletter.

I'd also like to thank Nina Wilde, Stacey Yount, S. Churchill, Marsha, Kathleen Blose and Emma Nicholson for contributing to this newsletter.

We do have an area of our newsletter set aside for patients' writings called "The Patient's Voice". It is a place where patients and caregivers can write about experiences relating to dysautonomia - both positive and negative. It is a place to share medical experiences, suggestions, short stories and poetry. Send contributions to: staff@dinet.org

Here is the newsletter: http://www.dinet.org/Fall2004/fall04news1.htm

Sincerely,

Michelle Sawicki, President

DINET

PO Box 55

Brooklyn, MI 49230

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HI

My name is susan. My daughter Abby 11 has recently been diagnosed with POTS. We still have some further work up but it looks like she has POTS. I have been on the internet researching POTS and found this site. I would like to talk to mothers of childen with POTS and children/adults that have had the syndrome.

It has been tough this month Abby out of school and me out of work. Talking to others that have POTS, who they have seen for specialists and what their treatment and prognosis is will help

Thank you

Sue

Massachusetts

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Abby

I'm sorry, almost missed this all together because sometimes I don't go back to topics that I've already read.

Welcome aboard by the way.

You need to start your own Post to get a good response. I'm more than happy to talk to you but none of my kids have been diagnosed with POTS and right now they only show signs of some dysautonomia. I would be happy to answer anything I might know about so you can email me personally or post here.

steph

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I moved this post from the "Information and Announcements" page so that it would hopefully get some replys. As Steph said, it will probably get more replys if you post it starting a new topic.

Best,

Michelle

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