Only 5% of Ehlers-Danlos Syndrome (EDS) sufferers are correctly diagnosed. It’s been estimated that EDS affects more than 1 in 5,000 people worldwide. But, experts think that's conservative.
Each year in the US, 650,000 additional sufferers are un-diagnosed or misdiagnosed due to physician oversight or lack of knowledge about EDS.
"1 in 10 Americans have hypermobility connective tissue disorders," according to EDS expert, Dr. Fraser Henderson. That's 30 million people - and we don't know exactly how many of them are afflicted with EDS. Most people with EDS - and the people who care for them – don’t know where to turn for information, advice and help with the challenges surrounding EDS. Don't give up hope!
The mission of EDS Awareness is to ensure greater understanding of Ehlers-Danlos Syndrome, both in the general public and within the medical community. Driven by participation and shared learning, the website content is presented “by EDSers, for EDSers”. We hope to improve the quality of life for those afflicted with EDS – and those who care for them. Tell someone about EDS today!
Click here for the full interview and more information about Dr. Henderson
Click here for more information about Kristen Means
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Attention EDSers!
Directory of Local Support Groups
in Development
EDSawareness.com launched its new online resource this August at the EDNF Learning Conference.
We are setup to help EDSers find or organize support groups in their local communities. Also, we are in the process of developing a Support Group Directory. We will provide 5 free web site pages to each support group to promote and publicize their local organization. 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. Read more...
Recent Blog Updates
May 23, 2013
Our EDS Awareness Support Groups report on their event planning for May. How can YOU participate? Add your awareness activity to the list. Get involved with similar activities. Join our team of support groups. Click here for more [ ... ]
May 23, 2013
Jessica lives in Canada and has a difficult time getting the treatment and support she needs. Her husband Luke is leading the charge! “Hi my name is Luke Covey and I’d like to ask for your help in getting my wife better. Background on [ ... ]
May 22, 2013
Catherine is suffering with Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), Crohns disease and many other health conditions. “Catherine Eves is on a local mission to raise awareness of what she describes as her [ ... ]
May 21, 2013
Jodie has been diagnosed with type three hypermobility. A planned Music Night in Carlisle helps Jodie with EDS related expenses. By Emily Parsons Last updated at 08:29, Tuesday, 21 May 2013 “Two students have called upon local talent to [ ... ]
May 20, 2013
Debbie Eaton has vascular EDS. She is finding resources to help her manage this devastating illness. Published in UK Daily Echo “A POOLE woman who describes her body as a “ticking timebomb” has bravely spoken out about the [ ... ]
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