User submission

I Bet You Haven’t Heard Of Ehlers Danlos Syndrome (Eds)

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

90% of people with EDS are female

I Bet You Haven't Heard Of Ehlers Danlos Syndrome (Eds)

EDS feels like living the day after a car crash every day

I Bet You Haven't Heard Of Ehlers Danlos Syndrome (Eds)

Our bodies efforts to hold everything in place can lead to pain and even hospitalization

I Bet You Haven't Heard Of Ehlers Danlos Syndrome (Eds)

3Kviews

I have Ehlers Danlos Syndrome, i enjoy photography and long drives with the roof down :) fb.com/campaign.eds fb.com/tlc4pics

Read less »

I have Ehlers Danlos Syndrome, i enjoy photography and long drives with the roof down :) fb.com/campaign.eds fb.com/tlc4pics

Read less »

What do you think ?

POST

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 ;)

7points

Toronto'nian 7 years ago

This comment is hidden. Click here to view.

Load More Replies...

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.

5points

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?

3points

Load More Replies...

Rouha Gol 7 years ago

We have one or two doctors who are competent in Australia - Chris O'Callahan who is more known for his work in autonomic disorders however has extended into Ehlers danlos and supposedly a Rheumatologist in Brisbane who happens to have cEDS himself. But only treats paediatric cases. There is a marfans clinic in Brisbane but it is not open to Ehlers danlos :/. Basically we are stuck with not much.

1point

Toronto'nian 7 years ago

the problem is that your population is too low for that. Europe is way wealthier and has more population, therefore treatment for rare diseases are easier there.

-3points

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.

5points

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

-2points

Load More Replies...

Load More Comments

POST

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 ;)

7points

Toronto'nian 7 years ago

This comment is hidden. Click here to view.

Load More Replies...

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.

5points

Jay Shadforth 7 years ago

3points

Load More Replies...

Rouha Gol 7 years ago

1point

Toronto'nian 7 years ago

the problem is that your population is too low for that. Europe is way wealthier and has more population, therefore treatment for rare diseases are easier there.

-3points

Kari Russell 7 years ago

5points

I Bet You Haven’t Heard Of Ehlers Danlos Syndrome (Eds)

90% of people with EDS are female

EDS feels like living the day after a car crash every day

Our bodies efforts to hold everything in place can lead to pain and even hospitalization

Games

Winta Seiko

Winta Seiko

Word Search

WordroW

Jigsaw

Crossword

Sudoku

Picdoku

Killer Sudoku

Kriss Kross

Word Flower