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One in about 2,500 people has EDS and most people with EDS dont know it. How is this possible?…
How is this possible?
EDS is a connective tissue disorder that is almost invisible to even the trained eye. It presents as extremely widespread symtoms like chronic pain, gastrointestinal issues, partial and full joint dislocations, memory loss, comprehension issues and many more! Any given person has quite a number of symptoms and everycase is different!
As doctors cannot see connective tissue many EDSers get diagnosed with fibromyalgia and/or chronic fatigue syndrome.
It takes a very expensive, rarely available genetic test or a well versed geneticist to see EDS in a patient.
I have Ehlers Danlos Syndrome and im trying to help people with this condition to be properly treated and diagnosed.
Occassionally i am able to do some photography to show some of our invisible pain and raise awareness for all people with EDS.
I have been working on this for less than a year but hope that with awareness will come better research and treatment for patients with Eds. Please note the bruising is makeup to show the pain of an individual with EDS and while easy bruising is a symptom you don’t need to show such violent bruising to have EDS.
More info: Fb.com
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What do you think ?
Rouha Gol 7 years ago
Cause apparently doctors who treat patients forget that literature contributes towards being adequately informed....thought I'd help out a lil bit ;)
Christie Ashton 7 years ago
The comment about an eds place in australia.... do tell where that is as I live in australia and have been told to move YES MOVE to London no less as NO ONE treats eds in australia.
Jay Shadforth 7 years ago
Hi Christie, I attended an International Conference on connective tissue disorders in Australia a few years ago. There is definitely a specialist clinic in Australia but it is restricted to paediatric care in one state (cant remember which). Get in touch with the CTD Foundation. The conference was a great source of info from sufferers as well as geneticists, and all manner of specialists in autonomic dysfunction, physiotherapy, dieticians etc. Are you on any of the Facebook EDS groups?
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Kari Russell 7 years ago
>goes on rant about how easy EDS is to diagnose >links to site that has an "it's our time" campaign because Ehlers Danlos patients have long been neglected >ignores that embarrassing faux pas yet criticizes every other link offered >claims to be able to test for hEDS yet can't back this up with sources >continues to criticize offered links I'm actually embarrassed for you.
Toronto'nian 7 years ago
(1) i never claimed that we can test for hEDS, that would be nonsense to claim. (2) it is sad to see that a lot of you people with the disease did not get diagnosed in an appropriate time frame (3) i am angered by amateur kickstarter campaigns not linked with any medical association to back them up or to guide money where it should be. and it should not be in a private photostudio on the gold coast
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Rouha Gol 7 years ago
Cause apparently doctors who treat patients forget that literature contributes towards being adequately informed....thought I'd help out a lil bit ;)
Christie Ashton 7 years ago
The comment about an eds place in australia.... do tell where that is as I live in australia and have been told to move YES MOVE to London no less as NO ONE treats eds in australia.
Jay Shadforth 7 years ago
Hi Christie, I attended an International Conference on connective tissue disorders in Australia a few years ago. There is definitely a specialist clinic in Australia but it is restricted to paediatric care in one state (cant remember which). Get in touch with the CTD Foundation. The conference was a great source of info from sufferers as well as geneticists, and all manner of specialists in autonomic dysfunction, physiotherapy, dieticians etc. Are you on any of the Facebook EDS groups?
Load More Replies... Kari Russell 7 years ago
>goes on rant about how easy EDS is to diagnose >links to site that has an "it's our time" campaign because Ehlers Danlos patients have long been neglected >ignores that embarrassing faux pas yet criticizes every other link offered >claims to be able to test for hEDS yet can't back this up with sources >continues to criticize offered links I'm actually embarrassed for you.
Toronto'nian 7 years ago
(1) i never claimed that we can test for hEDS, that would be nonsense to claim. (2) it is sad to see that a lot of you people with the disease did not get diagnosed in an appropriate time frame (3) i am angered by amateur kickstarter campaigns not linked with any medical association to back them up or to guide money where it should be. and it should not be in a private photostudio on the gold coast
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