Welcome!

Dec. 23rd, 2011 06:42 pm
trialia: River Song (played by Alex Kingston) smiling serenely at the camera while saying 'There's always a way out.' (who] river - always a way out)
[personal profile] trialia posting in [community profile] ehlersdanlos
Hello and welcome, to anyone who comes across this community!

Please, if you have any interest in EDS of any type or all types, or hypermobility syndrome, stick around! :) You don't have to have the condition to join the community. I hope to build this into a good resource for support and research for people who do have EDS and their friends and families, and anyone who's just interested in learning about it.

I wish everyone the very best in dealing with what is a very complicated illness, especially if you are here looking for information because you've just been diagnosed with it. I plan on making a comprehensive link list to sites that provide accurate information about the various types and posting new medical articles I find, or linking to them, in the future. If anyone would like to help me do this for a specific type of EDS - I have hypermobility type without significant crossover features, so I'm not as 'up on' new research for the other types as I am on my own - please let me know, I'd really appreciate the help.

Welcome, and I hope this community can be of use and help to you!

~ Trialia


To quote the Wikipedia article on Ehlers-Danlos syndrome, for a quick summary for newcomers to this group of illnesses and their effects (the italicized section is from the Wiki article):

Ehlers–Danlos syndrome (EDS) (also known as "cutis hyperelastica") is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (Type I, III and in the case of hypermobility-type EDS, as yet unknown). (There is one rare form of hypermobility type EDS that can be due to Tenascin-X deficiency, but this is under further investigation.)

The collagen in connective tissue helps tissues to resist deformation. In the skin, muscles, ligaments, blood vessels and visceral organs, collagen plays a very significant role and with increased elasticity, secondary to abnormal collagen, pathology results. Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening. There is no cure, and treatment is supportive.


People with Ehlers-Danlos syndrome frequently have chronic pain, among many other symptoms, as multiple systems of the body are affected by the condition. Other symptoms vary from repeated joint dislocations and easily-damaged skin to asthma, migraines and heart palpitations.

There are six major types of EDS, and in order of approximate prevalence, these are: hypermobility (formerly known as type 3), which affects 1 in 10,000 to 15,000 people; classical (types 1 and 2), affecting 1 in 20,000 to 50,000 people; vascular (type 4), which is the most likely type to be life-threatening, with an average life expectancy of 48 years, and affects 1 in 100,000 to 250,000 people; kyphoscoliosis (type 6), with fewer than 60 cases worldwide; arthrochalasis (types 7A and B), with roughly 30 reported cases worldwide, and dermatosparaxis (type 7C), with about 10 cases reported worldwide.

Hypermobility syndrome has been identified as being very similar to the hypermobility type of Ehlers-Danlos syndrome, and many experts are now very sure, and publishing works that state the belief, that this is effectively the same condition as EDS-3.
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Ehlers-Danlos syndrome & HMS support + discussion

June 2012

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