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![]() | Ideal sources for Wikipedia's health content are defined in the guideline Wikipedia:Identifying reliable sources (medicine) and are typically review articles. Here are links to possibly useful sources of information about Ehlers–Danlos syndrome.
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![]() | The contents of the Classification of Ehlers–Danlos syndrome page were merged into Ehlers–Danlos syndrome. For the contribution history and old versions of the redirected page, please see its history; for the discussion at that location, see its talk page. |
![]() | On 3 February 2024, it was proposed that this article be movedtoEhlers–Danlos Syndrome. The result of the discussion was Moved to Ehlers–Danlos syndrome. |
This article was the subject of a Wiki Education Foundation-supported course assignment, between 26 August 2019 and 9 December 2019. Further details are available on the course page. Student editor(s): Morganbinnie0315, Hjh74.
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This article was the subject of a Wiki Education Foundation-supported course assignment, between 26 August 2019 and 15 November 2019. Further details are available on the course page. Student editor(s): Tt6589, Nicholled, SRThiel, DMackay95.
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This article is or was the subject of a Wiki Education Foundation-supported course assignment. Further details are available on the course page. Peer reviewers: Sheaalix.
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I came to this page from an article on a professional contortionist, which mentioned she had this syndrome. It seems that many other contortionists have this syndrome. This seems to be a notable fact worth mentioning in the article. Syndromes do not have to always have a negative impact on life.
RedTomato (talk) 23:02, 7 January 2011 (UTC)Reply
I have Ehlers-Danlos Syndrome. Can I edit to add images? — Preceding unsigned comment added by 71.60.25.118 (talk) 13:58, 10 November 2012 (UTC)Reply
"Naming and classifications prior to Beighton's 2008 nosology, revised in 1997, can be considered obsolete." - This sentence doesn't make sense: Was Beighton's 2008 nosology revised in 1997 (in which case surely it is either Beighton's 1997 nosology, puplished or re-published in 2008), or are all other classifications prior to the 2008 nosology rendered obselete, in which case what is the relevance of the previous revision (if that's what it was)? Epideme (talk) 00:04, 16 August 2013 (UTC)Reply
I have removed a large number of entries from the "Signs and Symptoms" section that were not backed up by references. I am leaving them here for future reference. Anyone who find the references to add any of them back into the article with references should feel free to edit the list to reflect that. Sunrise (talk) 18:47, 28 December 2013 (UTC)Reply
Extended content |
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Musculoskeletal:
Skin:
Cardiovascular:
Other manifestations or complications:
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Obvously the zeal to trim wikipedia has backfired. Here a compatent medical article has been written and because deletionist insist on deleting with out regard we now have a flawed article. If we can not check the links they should not be in red. That is a fools mistake advertising your flaws. The deleted links should be non clickable black or the original articles that expandied our knowledge base should be restored. 99.137.241.158 (talk) 00:24, 30 May 2014 (UTC)Reply
I just noticed this edit: https://en.wikipedia.org/w/index.php?title=Ehlers%E2%80%93Danlos_syndrome&diff=573002119&oldid=570584539 Blue sclera and petechia were definitely used in my diagnosis. Blue sclera are found in any connective tissue disorder. Macoafi (talk) 20:56, 11 June 2014 (UTC)Reply
Can you provide an actual source? Otherwise, personal, unsourceable experiences, don't belong on wikipedia. ShimonChai (talk) 06:46, 24 July 2017 (UTC)Reply
The "classification" section appears to plagiarize the Ehlers-Danlos syndrome page of an NIH genetics site (http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome.) That page reads, in part:
"In the past, there were more than 10 recognized types of Ehlers-Danlos syndrome. In 1997, researchers proposed a simpler classification that reduced the number of major types to six and gave them descriptive names: the arthrochalasia type, the classic type, the dermatosparaxis type, the hypermobility type, the kyphoscoliosis type, and the vascular type. Other forms of the condition may exist, but they have been reported only in single families or are not well characterized."
Compare to the "Classification" section:
"In the past, there were 10 recognized types of Ehlers–Danlos syndrome. In 1997, researchers proposed a simpler classification that reduced the number of major types to six and gave them descriptive names.[17] These six major types are listed here. Other types of the condition may exist, but they have been reported only in single families or are not well characterized."
I suggest this passage be rewritten to be less . . . shamelessly stolen. — Preceding unsigned comment added by 174.50.158.152 (talk) 02:34, 5 July 2015 (UTC)Reply
This may sound stupid, but is there a way to crop the dog photo? The lady stretching the dogs skin looks happy, and even though I don't know the circumstances in which the picture was taken, it makes me sick. I cannot think of anyone being happy with someone (pet or person) having this awful disease. BluJay (talk) 02:27, 18 August 2015 (UTC)Reply
Hi, I have CEDS and I’m happy much of the time.2601:600:C580:9080:D4A5:83BD:D1F5:DD31 (talk) 12:42, 4 January 2020 (UTC)FloppybabyReply
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Overall, I feel this article is going in a great direction. The information presented aims to raise awareness about this set of often misunderstood connective tissue disorders. I do think there should be better organization of the information provided and some of the statements are unintentionally misguided. Not everyone has daily pain and this set of disorders has a large degree of variability in symptoms and clinical presentation. It is extremely important to note the difference between the different types of Ehlers-Danlos Syndrome. Many individuals who are learning of this syndrome for the first time may get the impression that these disorders are not independent of each other, when in fact the only commonality between the types is the effect on collagen synthesis and similarity of some clinical features. I would like to propose having a single Ehlers-Danlos Syndrome page with links to sub-pages for each of the types noted. Each of these disorders is so different from the others that some of the information presented is not relevant for all of the types. For example, Type IV or Vascular form is the only type attributed to a reduced lifespan. Organ rupture is a major feature of this type, but is actually very uncommon among the other types. There is simply too much information to put everything on one page; it would make more sense to provide links on a primary page to more in depth information on secondary pages. As an example, please refer to the page on Muscular Dystrophy. There is a single primary page for the entire set of dystrophies, then links to subsets. I would love to hear what others feel about my evaluation and proposals. I am an Ehlers-Danlos patient myself, and have a passion for spreading awareness. I do see citations are needed for several items on the page and I would be happy to provide these.
This paragraph needs references. It doesn't seem like a syndrome that is particularly obvious to a stranger's eyes. --Richardson mcphillips (talk) 16:04, 13 April 2016 (UTC)Reply
Removed it. No sourcing and NPOV problems with the statement. ShimonChai (talk) 18:25, 23 July 2017 (UTC)Reply
"Additionally, many people with EDS encounter difficulties involving frustration with the medical system and the socially inconvenient combination of appearing normal while being in severe pain.[5][6] Because people can appear healthy despite EDS, it is considered an invisible disability.[7][8]"
I actually made a mistake in my revision note on my first edit. It was not removed by Nosologie. My apologies. It was actually removed by Doc James in this edit: https://en.wikipedia.org/w/index.php?title=Ehlers%E2%80%93Danlos_syndrome&direction=next&oldid=740536159
I added it back in my edit: https://en.wikipedia.org/w/index.php?title=Ehlers%E2%80%93Danlos_syndrome&oldid=743346225 That edit was then followed by my adding in an oxford comma, to make it a bit more clear and readable. Many people have pointed out that it can be of benefit in some sentences, and I think that one where it now is, is nearly a textbook example of such cases. (...involving frustration with the medical system, and the socially inconvenient combination...)
The reason for my edit is that I have Ehlers Danlos Syndrome, and I think it is important to include the fact that those with EDS do often look entirely normal, but are also, in many, if not most cases, in extreme pain. This is something that I would like for people to know when they look up this article. I don't know why Doc James removed it, but I've put it back. If someone can suitably explain why it should not be there, then I will happily remove it again, myself. I'm all for ensuring a high quality article, but it is my opinion that more information is better than less. I think we can agree, yes?
(I also can't seem to edit my revision note. Again, I do apologize for that mistake in the revision note. I apparently saw a lack of that sentence, but perhaps, got the wrong link somehow? Not sure how that happened, but it was my mistake.)
Hi! I'm returning to Wikipedia after a long absence due to medical issues and now with a new diagnosis of EDS. I noticed that the Fibromyalgia page on Wikipedia doesn't mention Ehlers Danlos Syndrome, even though a large number of us with FMS are now being diagnosed with EDS as awareness increases. I think it would be very helpful to many people to steer them this way if they show other EDS symptoms. I also noticed there's no mention on this EDS page of Mast Cell Activation Disorders, Including Mast Cell Activation Syndrome, despite it being a common comorbid disorder https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome And there's no mention of that at https://en.wikipedia.org/wiki/Multiple_chemical_sensitivity even though MCS and MCAS strongly appear to be overlapping syndromes by different names. I would like to find supporting studies and link all these things together for people learning about these conditions. I think we could connect A LOT of dots for people suffering from these syndromes, like myself, or people they know with these problems. I keep meaning to do it myself, but I'm in them middle of a lot of medical stuff myself, of course, and I'm relearning how to edit here, too, after many years away, so I'm asking that if anyone would love to make these really significant contributions for the greater good to please feel free to jump on it. — Preceding unsigned comment added by AliaZebra (talk • contribs) 01:11, 3 November 2016 (UTC)Reply
See Wikipedia:Five pillars#WP:5P2. If you can find the aforementioned supporting studies go ahead, if not, it would be NPOV to push an agenda of trying to create awareness which violates pillar 2 of Wikipedia. ShimonChai (talk) 21:00, 23 July 2017 (UTC)Reply
One thing I've noticed is a lack of mention of EDS in articles concerning associated conditions, even when those are disproportionately known to occur alongside EDS. 73.235.166.151 (talk) 03:36, 22 August 2017 (UTC)Reply
For this "A Swedish study of more than 1700 individuals with Ehlers–Danlos found an increased risk of psychiatric disorders including bipolar disorder and depression (but not with schizophrenia) in Ehlers–Danlos patients. Due to concerns that impaired connective tissue in the female reproductive tract would increase the risk of adverse pregnancy outcomes, researchers have recently examined pregnancy outcome in Ehlers-Danlos women. Ehlers-Danlos syndrome in the mother was not linked to preterm birth, intrauterine growth restriction of stillbirth. "
?Doc James (talk · contribs · email) 19:05, 16 May 2017 (UTC)Reply
As of Mar 2017, the 2017 International Consortium on the Ehlers-Danlos Syndromes has changed the name from "Ehlers-Danlos Syndrome" to "the Ehlers-Danlos Syndromes". Suggest page name be changed to reflect the current standard. [1][2]Zentomologist (talk) 20:00, 21 August 2017 (UTC)Reply
References
This page requires a complete overhaul as the result of the formation of The International Consortium on EDS and Related Disorders and their publications in the American Journal of Medical Genetics Part C: Seminars in Medical Genetics, Special Issue: The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes, March 2017, Volume 175, Issue 1, Pages i–i, 1–245, Issue edited by: Brad T. Tinkle, Fransiska Malfait, Clair A. Francomano, Peter H. Byers, Copyright © 2012 Wiley-Liss, Inc., A Wiley Company
http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.v175.1/issuetoc
I consequently urge User:Doc James to refer to up to date publications on the subject. He is not an expert on the subject, and while I'm sure his intentions are honorable, this medical condition needs to be properly diagnosed and treated so that those patients and physicians concerned have access to the most recent research and findings available.
Nomenclature: This group of disorders of the connective tissue are now called The Ehlers-Danlos syndromes - plural. This page should not be based on what "We tend to" do, but should be based on what the experts themselves are using:
http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31547/pdf
https://www.ehlers-danlos.com/international-consortium/
Subtypes: The Ehlers-Danlos syndromes are no longer refereed to using numbers. There are currently 13 identified subtypes of EDS, named as follows:
This new nosology has been available since March of 2017. Continued use of the now 19 year old Villefranche Nosology perpetuates the misdiagnosis of patients with EDS.
http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31552/pdf
https://www.ehlers-danlos.com/eds-types/
Finally, I suggest adding a paragraph on the Hypermobility spectrum disorders (HSD).
http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31539/pdf
https://www.ehlers-danlos.com/what-is-hsd/
END
Have updated the classification to the new one. ICD10 as of 2016 still uses singular.[3] Doc James (talk · contribs · email) 18:58, 23 September 2017 (UTC)Reply
Am happy to contribute to this work, given some guidance as to how to proceed. Lfstevens (talk) 08:40, 25 September 2017 (UTC)Reply
The International Consortium of the Ehlers-Danlos syndromes has published a complete criteria of all EDS types in 2017, and this is published through the Ehlers-Danlos Society. The common criteria for all EDS types is the Beighton Score. The skin involvement has been put in the 'minor criteria' section from the revision in the hEDS criteria. There are photos in the journal article as well, and I thought it would be helpful for the improvement of this page. I believe that the current criteria used for diagnosis are from the Consortium.
Also, the Ehlers-Danlos Society has published a number of resources through their site.
Poeticfeelings (talk) 13:56, 31 January 2019 (UTC)Reply
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Hi, this is not a major problem, so I don't really mind which way it ends up going, but I'm interested in establishing what the consensus with regards to the inconsistent use of the EDS acronym in the article is.
The body of the article consistently uses the forms EDS as singular and EDSs as plural. From this it follows that the S in the acronym is considered to stand for the singular syndrome.
That is incompatible with the use of the acronym in the lead, where the plural form of the name is followed by what the body of the articles defines as the singular form of the acronym. There is a mitmatch in the grammatical number. Dr. Vogel (talk) 14:31, 26 March 2018 (UTC)Reply
This is a minor point, but I can't fix it myself because I didn't create the figure and am not familiar with the topic. The B&W micrograph figure with a caption beginning "The collagen fibril and EDS..." contains subcaptions for the small photos (a-e), but it lacks a caption for photo (f). This is unnecessarily odd and seems wrong, even if the omission was originally intentional for some reason. 2601:647:4600:9491:4D8A:4114:2782:30 (talk) 06:47, 26 June 2018 (UTC)amberckerrReply
The problem with the article is that the photos mainly show the more extreme forms of hypermobility and skin elasticity, when less dramatic manifestations of the most common form of EDS, hypermobile EDS are far more common (and this misconception prevents and delays accurate diagnosis in many cases; the article still gives an impression that you have to have the extreme contortionist kind of symptoms to have EDS). You don't need to have most of these at all; the diagnostic criteria for hEDS in particular involve the Beighton score of hypermobility, plus symptoms beyond the skin and joints, such as gut problems, hernias etc. (And yet, some people can have hEDS and even be stiff!) The photos seem to be mostly of the classical type as well, which is far rarer. I suggest that we overhaul the photos so that the main image is a composite one of someone performing the Beighton movements to the point where they "pass" the test (maybe including the "dramatic" variants in some of the pictures and the less dramatic in some of them?) and that the subsection of each form will have images that accurately portray the most usual manifestations of the symptoms in that particular subtype.
Here's a woman demonstrating a good example of the most common type of EDS, with photos of how it manifests in her: https://mastcellblog.wordpress.com/journey/edsphotos/ Which is definitely an eye-opener in comparison to the photos in this article. Also, a good drawn illustration on hypermobility fulfilling the Beighton criteria here: https://twitter.com/irishedsandhsd/status/497459235350118400 And more drawings and a video from the Ehlers-Danlos Society, here: https://www.ehlers-danlos.com/assessing-joint-hypermobility/
So it's that kind of thing the article needs more of. Right now, it's like representing the Dog article with just a photo of a chihuahua, when the variety between dog breeds is enormous and the most common dog breeds aren't anywhere near as tiny. And yes, I realise digging out references, especially with photos, is going to be tricky. But just having the Beighton stuff right at the top would be a huge help. --Snowgrouse (talk) 13:10, 20 August 2018 (UTC)Reply
http://ebooks.iospress.nl/book/ehlers-danlos-syndrome-a-multidisciplinary-approach
That could be an excellent source. Snowgrouse (talk) 11:13, 24 August 2018 (UTC)Reply
The 'Ehlers-Danlos Syndrome due to Tenascin X- Deficiency' is also referred as Classical-Like Ehlers-Danlos Syndrome (clEDS) due to the AR inheritance of mutation of the TNXB gene. As a result, I am removing the overlapping category mentioned below amongst the unrecognized types of EDS.
Thanks everyone! Poeticfeelings (talk) 12:42, 27 April 2019 (UTC)Reply
Is this photo representative?
That looks like pretty normal elasticity to me. Is it because it should be tighter on a 16-year-old? Correctrix (talk) 05:37, 29 August 2019 (UTC)Reply
I am planning on updating and lengthening the 'general eds', 'vascular eds', and 'hyper mobility eds' subsections under the classification heading. The updates are to keep the sections up to date with current research and to try and make the article easier to navigate for someone specifically looking for one of the previously mentioned types of eds. I also plan on adding ten or so sources to the bottom of the page. Hjh74 (talk) 15:18, 1 November 2019 (UTC)Reply
I just updated the Classification section under Diagnosis. I added information regarding alternative classification, grouping by pathogenetic mechanisms, and added a citation. I also updated the cardiac-valvular, periodontal, and myopathic EDS sections using information from the Ehlers-Danlos Society and the 2017 Diagnostic Criteria. [1] SRThiel (talk) 17:46, 6 November 2019 (UTC)Reply
References
User:Doc James, I'm not sure that this is the best way to present that information.
What were you trying to accomplish with this change? Just making it shorter? WhatamIdoing (talk) 23:27, 29 May 2020 (UTC)Reply
The following Wikimedia Commons file used on this page or its Wikidata item has been nominated for deletion:
Participate in the deletion discussion at the nomination page. —Community Tech bot (talk) 08:38, 7 April 2022 (UTC)Reply
The history section should go back further ("first described") and include at least a link to biographical notes on the presumed first describers, Drs Ehler and Danlos? Did I miss that? I'd suggest that a good place for such a passage is at the top, not the bottom, of the page. Midgley (talk) 11:12, 7 July 2022 (UTC)Reply
I suspect "variation in specific genes" rather than "specific gene variation" would be the correct phrase, but it isn't my field so I've not altered it. Midgley (talk) 11:13, 7 July 2022 (UTC)Reply
The following Wikimedia Commons file used on this page or its Wikidata item has been nominated for deletion:
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There appears to be a misunderstanding regarding the name of this disorder. I see on this Talk page where weight was given to a 2017 international consortium's reference to this disorder as "Ehlers-Danlos Syndromes" and a mistaken belief that the consortium undertook a name change for the disorder. To believe such a thing reflects a fundamental misunderstanding of what a consortium is and that particular consortium's goal.
A consortium is a group of people, organizations or businesses with a common interest coming together to discuss the common interest, pool resources and meet the goals of the consortium. Consortiums have NO authority to change public policy, or, in the medical world, to change the names of diseases or disorders.
The American Medical Association, and by extension, the Journal of the American Medical Association, (JAMA), the European Health Union, the European Medicines Agency, and the Centers for Disease Control and Prevention (CDC), to name a few, have classified or refer to the disorder as "Ehlers-Danlos Syndrome." Many elements go into the nomenclature of illnesses, conditions and diseases. Medical diseases and disorders are not renamed by consortiums.
If you are confused by seeing the name written different ways in different places, consider EDS in relation to other medical disorders that have multiple sub-classifications under the umbrella of a singular name: Cancer, Arthritis, Mental Illness, Hepatitis, Heart Disease, to name a few. While we have seen the word "cancer" used as "cancers" when appropriate, the disease is not called "Cancers." Ehlers-Danlos Syndrome has 13 different types, but they are all part of the disorder called "Ehlers-Danlos Syndrome." Finally, the word "syndrome" in the name should be capitalized because it is part of the formal name. I am moving this article to a new article with the correct name, "Ehlers-Danlos Syndrome." Keeping it as Ehlers-Danlos syndromes" makes Wikipedia look ignorant, a reflection of a mistake that appears to have come from a single individual who, while making good-faith efforts to improve Wikipedia, entirely misunderstood the issue. I am making this change to ensure Wikipedia reflects accurate information and, ultimately, excellence. All the best to all of you. MarydaleEd (talk) 01:33, 3 February 2024 (UTC)Reply
The result of the move request was: Moved to Ehlers–Danlos syndrome. Consensus is that syndrome is lowercase and singular. While editors arguing against the move note that there has been an increase in scientific papers using the plural form ever since the consortium announced the name change, consensus still appears that the singular form is still the established and most routinely used name. (non-admin closure) Bait30 Talk 2 me pls? 19:38, 23 February 2024 (UTC)Reply
Ehlers–Danlos syndromes → Ehlers–Danlos Syndrome – This may be the wrong place for this, but I was unable to move this page to a page with the correct title. An editor misunderstood the action of a consortium that met in 2017 and mistakenly thought the consortium undertook to rename the disorder. That particular consortium did not undertake to rename it, its mission was completely different. Consortiums have no authority to name or rename medical disorders. This disorder is and has always been called Ehlers-Danlos Syndrome, as it is referred to by the American Medical Association (AMA), the Journal of the American Medical Association (JAMA), the Centers for Disease Control and Prevention (CDC), the New England Journal of Medicine, and the European Health Union. What a consortium - any consortium - chooses to call it is irrelevant. Also, the redirect of "Ehlers-Danlos syndrome" is inaccurate. Please see the Talk page for a full, in-depth explanation. MarydaleEd (talk) 02:18, 3 February 2024 (UTC) This is a contested technical request (permalink). – robertsky (talk) 22:45, 3 February 2024 (UTC) — Relisting. – Hilst [talk]
23:00, 10 February 2024 (UTC)Reply
Hilst [talk]
23:00, 10 February 2024 (UTC)ReplyHilst [talk]
23:00, 10 February 2024 (UTC)Reply
only words and phrases that are consistently capitalized in a substantial majority of independent, reliable sources are capitalized in Wikipedia.PS: I don't feel strongly about the singular matter, actually. If newer source material more routinely goes with the plural to reflect better understanding of EDS, then we should prefer the plural. I'm not sure of a simple way to do such an analysis, however. — SMcCandlish ☏ ¢ 😼 05:42, 15 February 2024 (UTC)Reply
routinely use the new nameper wording of WP:NAMECHANGES. Cinderella157 (talk) 13:08, 16 February 2024 (UTC)Reply
The discussion above is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.
There was recently a discovery of a 14th variation. I'm not very familiar with how to edit, update, and add to wikis so I'm hoping someone can add this. I don't think it needs to be a new topic but I have no idea how to suggest edits to existing info. A new mutation has been identified and they are calling it the 14th variation. Here's an article: https://www.nature.com/articles/s41431-024-01559-1 ChiChi17 (talk) 01:04, 13 April 2024 (UTC)Reply