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Online Support Groups

Posted Nov 17 2008 11:44pm 1 Comment
There are many online support groups and forums for people with Chiari. If you go to the Yahoo Groups Home Page and search for " Chiari" you will find over 160 groups you can join. Once you register, you will be able to read all the member's messages and post your own questions and comments. You can post your messages for the entire group to read, or email members individually for more privacy.

The Yahoo support groups I find most helpful are hosted by WACMA (the World Arnold- Chiari Malformation Association) and CCI ( Chiari Connection International). WACMA currently has over 7000 members and CCI has over 1200. Both groups have moderators who strive to keep posted messages on topic. They also try to work with doctors to help answer some of the more difficult questions members may have.

Another source of information and support can be found in the ASAP forums. (American Syringomyelia Alliance Project). Subjects that you can read about and discuss there include "All about Chiari, Syringomyelia and Related Disorders", "Pediatrics" , "Disability Insurance Issues" and more.

ASAP is also starting a new virtual support group as part of their ASAP Outreach Program. Virtual support groups meet monthly by telephone to discuss common issues and share experiences with one another. They are facilitated by ASAP staff and volunteers, and groups are limited to eight to ten members. If you're interested in participating in one of these groups beginning in fall 2008, please send an email to Ellie McCallum.

Column of Hope, a Chiari and Syringomyelia Research Foundation, also has an online forum you can participate in. Their topics include Peer Support, Research, News, Treatment & Remedies as well as an off-topic area where you can share a joke, chat or just vent.

Healing Friends is a Christian forum where people with Chiari and related disorders can share how they deal with their disorders, challenges, struggles and victories. There is discussion about medical issues, an area for your prayer requests, plus an off-topic area called "The Park Bench" where you can just relax and talk about something else for a change.

There is one thing I have noticed that I would like to bring to your attention. I have found that the majority of online messages are posted by people who are having problems. I suppose that may seem like a dumb thing to point out...I mean after all, it is a support group! But some days I find reading that reading all the emailscan make me feela little depressed. Not exactly the support I was looking for! So I always try to keep in mind that the people who are doing really well don't post to the groups because they just don't have the need - they have simply moved on.
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My name is Denice. I'm a 45yr. old wife, mom and grandma, and writer who lives with syringomyelia, tethered cord, neurogenic bladder, and chronic pain.

I have recently started a FB support group for all sufferers of chronic pain and disability entitled REFUGE, at  http://www.facebook.com/group.php?gid=120592401310050

I also manage a personal BLOG at: http://denicewhitaker.blogspot.com/  where I share bits and pieces of my experience of daily life with these challenges. Would love it if you'd check them out! 

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