Welcome To The EDS Alert Newsletter
This is a blog that will collect various links about Ehlers-Danlos Syndrome and pull them together into a weekly (or bi-monthly) 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 weekly 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 start reading 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)
- 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)
- US National Medical Library Info About EDS (free)
- NIH Research Into EDS (free)
- Livejournal Ehlers-Danlos Support Group
- MySpace Ehlers Danlos Support Group
As I find new sources, I will update this post – so feel free to bookmark it.
Here is my personal overview of what it means to have EDS. And a bit about me: I was first diagnosed with EDS Type 3 (hypermobility) a few years year back. I live in the US and am in my 40s. If you need to contact me you can do one of two ways: leave a comment to one of the newsletters or drop me an e-mail at: edsalert@gmail.com
If you’ve wandered here from LiveJournal, you can keep track of the EDS Alert Newsletter by going here and adding the newsletter to your Friends List: http://syndicated.livejournal.com/eds_alert_wp/
The RSS Feed for this newsletter is here
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.
[...] This is our quarterly round-up of information about Ehlers-Danlos Syndrome (EDS). For more information about me and this newsletter, please look here for Sources of Medical Info and Support Groups. [...]