LINKS:
- General information can be found on any major search engine, however, Wikipedia includes medical terminology and symptoms as well as a history of the condition. http://en.wikipedia.org/en/wiki/EhlersDanlos_Syndrome
- Another source of further information is the Mayo Clinic webpage on EDS. It lists the definition, symptoms, causes, complications, and various resources including coping and support: http://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/basics/definition/con-20033656
- The Ehlers-Danlos National Foundation: http://www.ednf.org/
- Inspire is a site that offers a community of support for various medical conditions and mental health issues (https://www.inspire.com/). The website allows readers to post about themselves and follow up on the most recent posts others have made in categories of interest. There are forums/ discussions for conversation answering questions, groups, and a journal feature that enables you to write and share with the community. Other members of the community comment on posts and offer a cyber support system for a condition not many know about.
- Being a part of the 'following' for the Ehlers-Danlos National Foundation gives access to posts relevant to the condition and advice others may have. (http://www.inspire.com/groups/ehlers-danlos-national-foundation/)
- My journal entry follows what it's like for me to have EDS and what that means in my life in part it is venting, in part it is articulating what EDS feels like to live with for me: https://www.inspire.com/mebby13/journal/opening-up-1/
Useful CONTACTS:
- University of Virginia Department of Genetics
- Virginia Commonwealth University Medical Center: Department of Rheumatology
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