This is a blog that will collect various links about Ehlers-Danlos Syndrome and pull them together into a quarterly newsletter. Please feel free to refer people who have EDS (or want to learn more about EDS) to this blog.
The information in the blog is organized in the form of quarterly newsletters using categories such as Blogs/Online Diaries (people talking about what it is to have EDS), Medical Articles, Disability/Legal issues, News etc. The most recent newsletter is always at the top of the page and you use the “previous entries” buttons at the bottom of each screen to scroll back to look for earlier articles. To read just the newsletters in reverse chronological order click here.
There are several places where EDS patients can locate medical information along with personal tips from fellow EDS patients. Most are free.
- CEDA – North American EDS Mailing List (free)
- CEDA Website (archived medical articles and tips)
- EDNF – US EDS Foundation – has both medical articles (free) as well as a member only forum
- Hypermobility Syndrome Association – UK Forum that focuses on EDS Type III (Hypermobility) (free)
- Ehlers-Danlos Bulletin Board Support Group (free)
- EDS Network Cares (free)
- Livejournal Ehlers-Danlos Support Group
- MySpace Ehlers Danlos Support Group
- Facebook Ehlers-Danlos Support Group
As we find new sources, we will update this post – so feel free to bookmark it.
Here the personal overview from one of our volunteers of what it means to have EDS. If you need to contact us you can do one of two ways: leave a comment to one of the newsletters or drop us an e-mail at: firstname.lastname@example.org
How To Follow This Blog: You can come back every few months and check for new updates. You can also sign up to receive the newsletter by e-mail. You can find the subscription button on the right sidebar or by clicking here and following the instructions.
If you use a Blog Reader you can set up an RSS feed by clicking here.
If you’ve wandered here from LiveJournal, you can keep track of the EDS Alert Newsletter by adding the newsletter to your Livejournal Friends List: http://syndicated.livejournal.com/eds_alert_wp/
Parental Advisory: Finally, some of the personal blogs and websites we may link to in the course of collecting information about Ehlers-Danlos may contain content that is adult in nature. If you are a parent, please take note of this.
Posting Policies: We only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below or e-mail us at: email@example.com. Please remember when you’re visiting people’s personal blogs or diaries that these often contain information of a personal and sensitive nature and to respect their privacy and concerns. We only quote excerpts from articles that require subscriptions or paid memberships to access.