After my freakout the last two days, I have come to realize that the best thing and only thing that I can do to battle this disease is to create a resource for others struggling with EDS. The numbers of us are so few, and the support resources available are minimal.
Even the national foundation site for EDS, http://www.ednf.com, is sorely lacking in any type of true help, other than descriptive information. If you think you or someone you love may have EDS, this site is great. Once diagnosed, the information dwindles - even the 'calendar of events' is blank for months on end.
Support groups are relatively abundant in Europe and Australia, but access to their sites is geo-restrictive. Chronic pain online groups are available, but also require a selection of maladies that do not include EDS, and state that basically, only those suffering from fibromyalgia, POTS, Lyme disease, and the like are invited to participate. Ironically, these maladies are the very same misdiagnoses EDS people are categorized as having.
Parents of EDS kids are accused of awful things, such as Munchausen by Proxy and child abuse, as their little loved ones come to school with frequent massive bruising, dislocations and broken bones.
Thus, it will now be my goal to focus not solely on my complications, but on providing tangible assistance and resources for people with all forms of Ehlers-Danlos. In the past, I have been a leader in my industry, and I now want to focus those skills on becoming a leader in the fight against my genetic disorder.
I encourage you to actively use the comments section for your own content, suggestions and resources you have used or encountered in your lives. I welcome both Western and Eastern medicine techniques and practices, suggestions for gentle healing yoga, meditation and spiritual assistance, regardless of religion.
For starters, here are some suggestions I have to kick off this new direction of Taping Myself Together:
Common Ground Meditation Center - courtesy of Sarah Faiks
http://www.commongroundmeditation.org
Common Ground is a meditation center located in Minneapolis, MN.
Dr. Kirmani - Geneticist at Mayo Clinic, Rochester, MN - my geneticist and EDS specialist
http://www.mayoclinic.org/ehlers-danlos-syndrome/ for more info
Ehlers-Danlos National Foundation - Types of EDS explained
http://www.ednf.org/index.php?option=com_content&task=view&id=1348&Itemid=88888969
Margaret Foote - a Virginia blogger with EDS, with whom I soon hope to connect
http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendID=60068651&blogID=258675651&MyToken=e2fa65ba-51b0-4154-81a7-0100b901e9ac
Everspring Health Cooperative - Dr. Blaska - my acupuncturist
http://www.everspringhealth.com
http://www.everspringliving.com
That's a start. I have a new outlook, and a new purpose to put what I learn about this incurable meanie to work for others.
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I welcome you to add comments, suggestions and resources you think may be helpful for those with EDS, and always appreciate your thoughts and prayers.