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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?
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
Load More Replies...
Catherine Marie 7 years ago
Since when is it wrong to also support our fellow EDSers and their projects? Ur full of ignorance, assumptions and judgement. Go to sleep.
Rouha Gol 7 years ago
The role of narrative medicine in the management of joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type. https://www.ncbi.nlm.nih.gov/pubmed/25821096
Rouha Gol 7 years ago
Ehlers-Danlos Syndrome-Hypermobility Type: A Much Neglected Multisystemic Disorder. https://www.ncbi.nlm.nih.gov/pubmed/27824552
Kristen Lucia 7 years ago
As a person with EDS, I wish I had known I had it when I was younger. Because of EDS I have had to go through 28 surgeries. 29 and 30 to happen this year. It would've been nice to hear I suspect EDS instead I get its inherited weakness or you're just double jointed or joint laxity. I fault physicians for this and those that train these drs. I didn't get diagnosed until I was 42. By then 10 ankle surgeries. 2 which were fusions. Now I'm going through joint replacements because of the early onset of arthritis. We are lucky in that my daughter was diagnosed at 6 but even with the early diagnosis and the work we do with her in PT and OT it hasn't stopped her from subluxing, nor has it stopped stomach issues but at least we know.
Rouha Gol 7 years ago
Oh and the entire March special edition of the American journal of Human Genetics....get reading kids....and stop killing patients ;)
Rouha Gol 7 years ago
Small fiber neuropathy is a common feature of Ehlers-Danlos syndromes. https://www.ncbi.nlm.nih.gov/pubmed/27306637
Toronto'nian 7 years ago
this article is titled "Psychosocial functioning in the Ehlers-Danlos syndrome." that has no relevance in the discussion here, on top: it is from 1994
Load More Replies... Toronto'nian 7 years ago
that is a Handbook for medical students/residents. no scientific value. outdated
Load More Replies... Toronto'nian 7 years ago
this article talks about "psychiatric disorders in ED", this is published in Rheumatol Int. - a journal with less than 3 impact factors. scientific value of a yellow press magazine
Load More Replies...
Zoe Vickers 7 years ago
I appreciate you trying to bring awareness to EDS. However, there are some misleading, and even outright wrong things in this post. It is not seen in females 90% of the time. Also, it's confusing to use things like 'memory loss'.. memory loss, is actually not what is happening and isn't a symptom of EDS. Memory loss, is something like Alzheimer's etc. What people with EDS have, is sometimes problems with attention, which leads to a bad memory. It's not the same thing. I understand how it can seem like it is, but I can tell from a neuroscience point of view, it's not. I also think it's important for people to understand there are different types. You're writing from a hEDS point of view, and I think it's important to say that. The photos are lovely. Thanks for campaigning for us.
Winta Seiko (Post author) 7 years ago
I have classical, maybe the info ive seen has had more of a hEDS standpoint, im not sure. I do think youre right about memory loss, while common with EDS its not directly (as far as i know) related to the connective tissue, perhaps more of a symptom of a symptom, pain/attention issues. Anyways thanks for the input, i cant really edit the post. Maybe i can but im new to bored panda and dont know how.
Load More Replies...
Lizzy R 7 years ago
I was diagnosed with Fibro about a year ago and it took over a year to get my pain issue a name. We watch Simon and Martina on youtube and Matrina has EDS which is how I learned about it. After having learned what it was me and my hubby now think I mgiht have EDS as it better fits my symptoms than fibro. The only common simptom I dont have of EDS is the joint dislocation. For my size I have the hyper flexability, and my skin is pretty elastic. But sadly I cannot get the test done as there is no money for it and I currently live in Honduras and will be living here for the next few years. Until then I will take meds to manage fibro and pray that it will be enough to keep the pain away.
Melany Nicholas Éli Mégane 7 years ago
Actually I can see everyone get pissed about Toronto'nian but he is pretty accurate on what he is saying. Before getting mad at him please see that he is giving you good advice and things to think about it. Yes here in Toronto they do the collagen test. Please watch Dr Scott Walsh video. http://www.theilcfoundation.org/resource-library/2016-conference-videos/
Winta Seiko (Post author) 7 years ago
Update: 1 in around 2,500 is DIAGNOSED with EDS. 90+ percent of EDSers dont know they have it, around 1 in 100 people worldwide has EDS.
Zoe Vickers 7 years ago
this isn't actually known for sure. It is best not to state things like they are facts, when there is lackinginformation to know, and when it's still being figured out. Also, with the name criteria, they are saying that many of the amount of people they thought had hEDS, would actually now have HSD. So it's no longer though to be that high, at all. It's important to stick to facts, and do proper research into something, if you're going to write about it. There is a lot of misinformation in this article. I appreciate the effort, but it really doesn't do us good to bring awaren ess, but with misinformation.
Load More Replies...
Erin Buhler 7 years ago
There are better ways to get to 50+ comments. Most of us already have enough difficulty with getting people to listen muchless understand. Perhaps you were trolling all of us, perhaps not. At any rate, as a physician, I would think that telling a whole group of people who struggle with such a horrible, dibilitating, and widely misunderstood by a majority of the medical community what you tried to tell us is potentially hurtful. If I could I would link the articles my geneticist sent me this week from the medical journals that were published in March. Which is very has very in depth information on EDS. Sadly Dr. V only sent me paper copies not a link.
Load More Replies...
Kari Russell 7 years ago
From that same website: https://ehlers-danlos.com/itsourtime/ You clearly have no idea what you're talking about. Your attempt to invalidate the struggle of thousands who have had a hell of a time getting the correct diagnosis angers ME.
Load More Replies... 
Sharon Meyer 7 years ago
Toronto'nian, if you are a physician (or a medical 'professional '), you sound like a very uncaring and unprofessional one, and I feel sorry for your patients.
Load More Replies...
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
Load More Replies... Catherine Marie 7 years ago
Since when is it wrong to also support our fellow EDSers and their projects? Ur full of ignorance, assumptions and judgement. Go to sleep.
Rouha Gol 7 years ago
The role of narrative medicine in the management of joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type. https://www.ncbi.nlm.nih.gov/pubmed/25821096
Rouha Gol 7 years ago
Ehlers-Danlos Syndrome-Hypermobility Type: A Much Neglected Multisystemic Disorder. https://www.ncbi.nlm.nih.gov/pubmed/27824552
Kristen Lucia 7 years ago
As a person with EDS, I wish I had known I had it when I was younger. Because of EDS I have had to go through 28 surgeries. 29 and 30 to happen this year. It would've been nice to hear I suspect EDS instead I get its inherited weakness or you're just double jointed or joint laxity. I fault physicians for this and those that train these drs. I didn't get diagnosed until I was 42. By then 10 ankle surgeries. 2 which were fusions. Now I'm going through joint replacements because of the early onset of arthritis. We are lucky in that my daughter was diagnosed at 6 but even with the early diagnosis and the work we do with her in PT and OT it hasn't stopped her from subluxing, nor has it stopped stomach issues but at least we know.
Rouha Gol 7 years ago
Oh and the entire March special edition of the American journal of Human Genetics....get reading kids....and stop killing patients ;)
Rouha Gol 7 years ago
Small fiber neuropathy is a common feature of Ehlers-Danlos syndromes. https://www.ncbi.nlm.nih.gov/pubmed/27306637
Toronto'nian 7 years ago
this article is titled "Psychosocial functioning in the Ehlers-Danlos syndrome." that has no relevance in the discussion here, on top: it is from 1994
Load More Replies... Toronto'nian 7 years ago
that is a Handbook for medical students/residents. no scientific value. outdated
Load More Replies... Toronto'nian 7 years ago
this article talks about "psychiatric disorders in ED", this is published in Rheumatol Int. - a journal with less than 3 impact factors. scientific value of a yellow press magazine
Load More Replies... Zoe Vickers 7 years ago
I appreciate you trying to bring awareness to EDS. However, there are some misleading, and even outright wrong things in this post. It is not seen in females 90% of the time. Also, it's confusing to use things like 'memory loss'.. memory loss, is actually not what is happening and isn't a symptom of EDS. Memory loss, is something like Alzheimer's etc. What people with EDS have, is sometimes problems with attention, which leads to a bad memory. It's not the same thing. I understand how it can seem like it is, but I can tell from a neuroscience point of view, it's not. I also think it's important for people to understand there are different types. You're writing from a hEDS point of view, and I think it's important to say that. The photos are lovely. Thanks for campaigning for us.
Winta Seiko (Post author) 7 years ago
I have classical, maybe the info ive seen has had more of a hEDS standpoint, im not sure. I do think youre right about memory loss, while common with EDS its not directly (as far as i know) related to the connective tissue, perhaps more of a symptom of a symptom, pain/attention issues. Anyways thanks for the input, i cant really edit the post. Maybe i can but im new to bored panda and dont know how.
Load More Replies... Lizzy R 7 years ago
I was diagnosed with Fibro about a year ago and it took over a year to get my pain issue a name. We watch Simon and Martina on youtube and Matrina has EDS which is how I learned about it. After having learned what it was me and my hubby now think I mgiht have EDS as it better fits my symptoms than fibro. The only common simptom I dont have of EDS is the joint dislocation. For my size I have the hyper flexability, and my skin is pretty elastic. But sadly I cannot get the test done as there is no money for it and I currently live in Honduras and will be living here for the next few years. Until then I will take meds to manage fibro and pray that it will be enough to keep the pain away.
Melany Nicholas Éli Mégane 7 years ago
Actually I can see everyone get pissed about Toronto'nian but he is pretty accurate on what he is saying. Before getting mad at him please see that he is giving you good advice and things to think about it. Yes here in Toronto they do the collagen test. Please watch Dr Scott Walsh video. http://www.theilcfoundation.org/resource-library/2016-conference-videos/
Winta Seiko (Post author) 7 years ago
Update: 1 in around 2,500 is DIAGNOSED with EDS. 90+ percent of EDSers dont know they have it, around 1 in 100 people worldwide has EDS.
Zoe Vickers 7 years ago
this isn't actually known for sure. It is best not to state things like they are facts, when there is lackinginformation to know, and when it's still being figured out. Also, with the name criteria, they are saying that many of the amount of people they thought had hEDS, would actually now have HSD. So it's no longer though to be that high, at all. It's important to stick to facts, and do proper research into something, if you're going to write about it. There is a lot of misinformation in this article. I appreciate the effort, but it really doesn't do us good to bring awaren ess, but with misinformation.
Load More Replies... Erin Buhler 7 years ago
There are better ways to get to 50+ comments. Most of us already have enough difficulty with getting people to listen muchless understand. Perhaps you were trolling all of us, perhaps not. At any rate, as a physician, I would think that telling a whole group of people who struggle with such a horrible, dibilitating, and widely misunderstood by a majority of the medical community what you tried to tell us is potentially hurtful. If I could I would link the articles my geneticist sent me this week from the medical journals that were published in March. Which is very has very in depth information on EDS. Sadly Dr. V only sent me paper copies not a link.
Load More Replies... Kari Russell 7 years ago
From that same website: https://ehlers-danlos.com/itsourtime/ You clearly have no idea what you're talking about. Your attempt to invalidate the struggle of thousands who have had a hell of a time getting the correct diagnosis angers ME.
Load More Replies... Sharon Meyer 7 years ago
Toronto'nian, if you are a physician (or a medical 'professional '), you sound like a very uncaring and unprofessional one, and I feel sorry for your patients.
Load More Replies... Related on Bored Panda
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