Resources…

For a condition that is considered rare, there is actually quite a lot of information out there if you look. As I have done my own research and educated myself, I have noticed that some sites are more helpful than others. Some are also for fun or light hearted (yet still helpful) and some are great in their simplicity and others are great because they dig a little deeper. So this page will be a consistently changing list as I add or replace links as I come across them 🙂

The following is the official site of the EDNF (Ehlers-Danlos National Foundation). I find this site has some great FAQs, some really simple yet precise descriptions, and is very easy to navigate, so if you are looking for information, this for me was the most helpful!:

http://www.ednf.org/eds-faqs

The following is a great article on EDS in the UK, with simple yet helpful facts, and some links and suggestions of resources for those in the UK:

https://home.bt.com/lifestyle/wellbeing/often-in-pain-double-jointed-you-could-have-ehlers-danlos-syndrome-11363983328007

The following site is a more simple and “fun” way of explaining it, and a good one to give to people who just want the “short answer” and aren’t interested in looking far or digging deep:

http://www.buzzfeed.com/zebrazebrazebra/31-random-facts-about-ehlers-danlos-syndrome-v5ff#.hvKWAAbXgy

And this one I love to send to people before they ask too many questions, and before they say things that are unhelpful and frustrating for those of us suffering from EDS (and other non curable conditions). I find that this is easier to pre empt unhelpful comments, than to try to explain to people afterwards why their comment was hurtful (and avoid a lot of embarrassment and defensiveness!) Please excuse the foul language!:

http://www.buzzfeed.com/zebrazebrazebra/16-things-healthy-people-say-to-edsers-v5ff#.utyeGGRJ76

For anyone with any type of EDS, here is a link to their Facebook support page. It is an incredible resource because the members are all over the world, so no matter what time of day or night, someone is there if you need them! They also organise virtual waiting rooms: Where you can let them know when you are going to the hospital for surgery or a procedure and a group of them will be on line to encourage you, connect with anyone who is with you if you can’t use your phone, pray for you if that is what you would like … you will never go into a procedure lonely again!!

https://www.facebook.com/groups/152615741473177/?fref=nf

The following link is one to a complicated but very medical based article on the role of EDS3 and other syndromes…

Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes

The following link is a really good one in describing the differences between JHS and EDS3 or HEDS and the Brighton Criteria:

The Brighton Criteria for JHS

and

JHS v EDS Hypermobility- Same Thing?

As apposed to the Beighton Score:

Beighton Score for Hypermobility

and

Beighton Score

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