EDS Support Group Directory in Development at www.EDSawareness.com
www.EDSawareness.com launched its new online resource at the EDNF Learning Conference last week in Cincinnati, Ohio. “We had an overwhelming response”, says John Ferman, Founder. “My wife passed away in 2008 – never knowing EDS was the cause of 30 years of chronic pain. This was the same year my daughter was diagnosed with EDS, after a 10-year search for answers. Our family’s challenges with diagnosis and healthcare is the reason I’m so passionate about increasing awareness about EDS”, Ferman explains.
Click Here for a Map of the local EDS Support Groups in your area:
“The public needs to know about EDS and the EDS community needs a method to locate EDS Support Groups. We are setup to help EDSers find and/or organize support groups in their local communities. Also, we are in the process of developing a directory of existing support groups. We will provide 5 free web site pages to each existing support group to promote and publicize their local organization. If there is no local support group in your area, we will help you organize a group and help set up your free web pages. We are in the process of locating existing support groups and will provide their leaders with names of individuals who want to join their group. If you are aware of an existing EDS Support Group, ask them to contact us at info@edsawareness.com to be included in the directory and get their Support Group on the map.”
We developed www.EDSawareness.com as an ‘Umbrella site’ for the EDS community.
Our goals and vision:
- Provide an informative resource for individuals suffering with EDS and their caregivers through www.EDSawareness.com
- Become a credible resource for those seeking information and referrals to reliable sources.
- Help support groups to organize and provide them a method to share and experience more socialized and personalized support.
- Educate the undiagnosed, and the public about Ehlers-Danlos Syndrome through various forms of media.
- Provide a resource for EDS recommended products and services through www.bodysupportstore.com and associated affiliates.
We welcome articles, videos, and all suggestions to make this site a valuable resource to the EDS community.
For more information, visit the site and contact us at info@edsawareness.com
We welcome comments and Likes regarding this story
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Dear, Dear Bendy,I know what you’re talking about – not from peorsnal experience but from the experience of my wife. As a young girl growing up she went through that whole thing of no one believing her. She has Ehlers Danlos, although hers would seem to be not quite as profound as yours.It has gotten progressively worse over time. The thing about EDS is that things stretch – and they don’t snap back. They just stay stretched. Her older sister was diagnosed with the same condition – and THEN, and ONLY THEN, would they believe Annie. After years of complaints.I understand you and your pain. I wish I could do for you as I have been able to do for Annie. I massage her back and ankles and knees every night – to give her ease so she can sleep. And then she gets up the next day and fights her way through to the next night – and the next massage – and the next night’s sleep. One day at a time. One massage at a time. I would do for you, if I could. I feel so badly that I can’t.
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Koratcats: Indy is fabulous. deilnitefy cardi smarts mixed with cardi heart. He is such a love bug, yet so intelligent perfect for service work. Old Coasty: EDS is rare. You might want to check I have type III or Hypermobility as they now refer to it. It causes dislocation of the major joints, easy bruising, and skin the can be very elastic and smooth/soft. severe musculoskeletal pain onset for me about my junior year of high school. Without strong pain meds, I cease to function. It’s a condition I wouldn’t wish on anyone.
Thanks for your comment.
You too can create an EDS Support Group in your local community. See the video at http://www.edsawareness.com
https://www.chronicpainpartners.com/category/videos/
John
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As soon as you can arrange it, get a complete physical to make sure
there isn’t some other physical problem causing the symptoms such as heart disease, hypoglycemia, epilepsy, thyroid problems or other conditions. All of the negative and catastrophic thoughts we have which lead to our symptoms can be reversed or greatly minimized by simple reinforcement techniques. If you are having a problem in traffic, avoid the traffic and keep to a less busy path until you find a treatment for your driving anxiety.