Peace, love and pancakes…
Michael ‘Doc’ Davis
Is there support out there for people with Syringomyelia and Arnold-Chiari Malformation?
Absolutely, there is!
One of the biggest battles that went with accepting the fact that I had Syringomyelia was the struggle to find more information about it. This was when I found out that what I had was as rare as my crazy type of comedy. Yes, I am a comedian but I do take this and all diseases VERY serious.
I have found lots of groups, Facebook pages and websites with great information on them. I put some of what I have found on the ‘Is There Support?‘ page on my website http://www.SyrinGoWhat.com. I hope that this page is a good resource of resources that can help you too.
We all need to help each other and help doctors help us.
Here is a great Caregiver Quick-Tip Pocket Guide from WORLDWIDE SYRINGOMYELIA & CHIARI TASK FORCE INC. This organization is a wonderful group of people helping all of us and providing ways for us to connect to each other. They are the first organization in the United States led by nurses and physicians to stand behind Syringomyelia as a disease! There are lots of other materials such as this on their website — http://www.wstfcure.org.