Resources (support and info)


Photo by Leo Gruebler

Support Groups and Forums

There are a few hypermobility forums and groups where you can read other people's stories, interact with them and find a lot of information and support on JHS/H-EDS. Even if you do not post on them, just reading other people's challenges and battles, successes and losses, and questions and advices can make a huge difference in your own attitude towards the condition and how you manage it.

I hope we will also see such a surge in awareness in India and one day many patients will receive the correct guidance and find support from others who are also diagnosed with the same condition.

Some sites I regularly use/read:

EDS Info
(This blog is one stop shop for extremely relevant articles related to Chronic Pain, EDS, and Fibromyalgia)

Sci Hub
(Find the full-text of any research article for free using d.o.i.)

Oh Twist 
(A superbly informative and well-written blog on JHS/HEDS by a fellow zebra)

Strength, Flexibililty & Health while Living with Ehlers-Danlos Syndrome
(Website by an inspiring EDS warrior packed with information and tips. Also see her other sites like http://edswellness.org/, http://mastcellresearch.com/


These are a few support websites (none of them Indian):

Spreading the light of knowledge

Informative Websites

An updated critique on EDS-HT (An educative article by an EDS expert)

When to suspect EDS-HT (Useful article by an EDS expert)

Hypermobility Syndromes Association (UK website for JHS/HEDS, has useful articles)

EDNF Resource Guides (USA website for EDS, has many useful resources including talks by renowned experts)

Irish EDS & HMS (Irish website for JHS/HEDS, filled with neatly presented information that is easily navigable. Check out the leaflets)

http://www.ehlers-danlos.org/about-eds/hypermobility/joint-hypermobility/


 

 
Trials and Tribulations of fellow Zebras

Personal Blogs

There are quite a number of blogs that were started by people newly diagnosed with JHS/H-EDS, which have very good content, but are no longer updated since a year or two. I imagine that their health problems and the struggle with this condition which can have sudden dips (with spine problems, dislocations etc.) is responsible for their stopping their writing.
There is an incredible amount of strength and courage out there! One cannot thank enough these bloggers who are taking the time and effort (a lot of effort) to document their story, to share valuable information and to provide support for the reader who lands on the blog.

Some blogs by people with JHS or H-EDS are:

https://inthefringes.wordpress.com/

http://hypermobilityhope.blogspot.com

https://hypermobilitysyndrome.wordpress.com/

http://www.lifewitheds.com/

https://ehlersdanloscontemplations.wordpress.com/

https://mastcellblog.wordpress.com/

http://www.edhs.info/#!understanding-eds-h/c10ni

https://anangelwithwings.wordpress.com/

http://i-need-that-seat.tumblr.com/

http://bodyfallingapart.tumblr.com/

http://chronicillnessproblems.tumblr.com/







Books and Articles


http://www.amazon.co.uk/Guide-Living-Hypermobility-Syndrome-Breaking/dp/1848190689/

https://movingprayer.wordpress.com/2013/06/05/teaching-yoga-to-people-with-hypermobility/

http://www.edhs.info/#!helpful-information/c1k8 

http://www.edhs.info/#!articles/c17zq

http://www.amazon.co.uk/Hypermobility-Fibromyalgia-Chronic-Pain-1e/dp/0702030058

http://www.amazon.co.uk/Hypermobility-Handbook--Management-Ehlers-Danlos-Syndrome/dp/098257715X/

http://www.amazon.co.uk/Know-Hypermobility-Syndrome-Ehler-Danlos/dp/0992721709

I have also put some books and their links in the sidebar on the right. I have no commercial interest in recommending these books and the links are not affiliate links. These are books that I found useful and wanted to share with others. 





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You are welcome to submit relevant links. Thank you.