Talk:Ehlers–Danlos syndrome

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Link to contortionism?

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)

Thank you for your suggestion. When you believe an article needs improvement, please feel free to make those changes. Wikipedia is a wiki, so anyone can edit almost any article by simply following the edit this page link at the top. The Wikipedia community encourages you to be bold in updating pages. Don't worry too much about making honest mistakes—they're likely to be found and corrected quickly. If you're not sure how editing works, check out how to edit a page, or use the sandbox to try out your editing skills. New contributors are always welcome. You don't even need to log in (although there are many reasons why you might want to). WhatamIdoing (talk) 23:05, 7 January 2011 (UTC)

Can I add images?

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)

Yes certainly. Let me know if you need help. They are added here [1]. Doc James (talk · contribs · email) (if I write on your page reply on mine) 22:47, 6 February 2013 (UTC)

Ambiguity/error

"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)

In my reading I assumed the intent is to infer that "[...prior to the] 2008 nosology (which hence supplants the previous edition, which was last) revised in 1997 (and is now therefore out of date,) can be considered obsolete." where the parentheses indicate the translation produced by the brain that lives in my head. Of course, there's a significant amount of theoretically missing information being bridged, but it could just be a case of badly structured text and/or poor choice of words (although still unreferenced) 202.89.189.7 (talk) 22:26, 10 January 2014 (UTC)

Signs and symptoms

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)

Extended content

Musculoskeletal: Muscle fatigue that increases with use Weak muscle tone (hypotonia) in infancy, which can delay the development of gross motor skills such as sitting, standing, and walking Osteopenia (low bone density) Stretchy ligaments and tendons Skin: Stretchy skin with a velvety texture Abnormal wound healing and scar formation, leading to widened atrophic scars Fatty growths on forearms or shins Papular Angioplasia Cardiovascular: Fragile blood vessels with tendency towards aneurysm including abdominal aortic aneurysm Life-threatening carotid-cavernous fistula Postural orthostatic tachycardia syndrome (P.O.T.S.) Orthostatic intolerance, theoretically caused by excessive distension of veins (upright posture causes blood pooling in lower body, leading to a 44–60% decrease in cerebral blood flow velocity Cystic medial necrosis Varicose veins Vascular skin conditions: Raynaud's phenomenon, livedo reticularis Other manifestations or complications: High and narrow palate, resulting in dental crowding Early-onset periodontitis Nearsightedness, which may be extreme Blue sclera Subluxated or dislocated ocular lenses Retinal detachment Flat feet Digestive disorders: (gastritis, gastroesophageal reflux disease, irritable bowel syndrome, diverticulitis, gastroparesis (partial paralysis of the stomach)) Dysautonomia Vulnerability to chest and sinus infections Intestinal/uterine fragility or spontaneous rupture Anxiety disorders, depression, psychosocial dysfunction Cranial instability Migraines, Horton's disease Problems with concentration and/or memory Problems with proprioception including dysmetria Talipes equinovarus (club foot), especially in the Vascular type Bleeding diathesis Petechia Cerebrospinal fluid leak (rent in the meningeal tissues: dura, arachnoid) Temporomandibular joint syndrome Surgical complications and intraoperative problems due to tissue fragility

over-zealous deletion

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)

Removed symptoms?

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)

Can you provide an actual source? Otherwise, personal, unsourceable experiences, don't belong on wikipedia. ShimonChai (talk) 06:46, 24 July 2017 (UTC)

Plagiarism?

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)

Dog Photo

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)

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)Floppybaby

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I'm afraid none of those links work and there is no way to verify the claim. I've removed it and added a citation needed tag, if you have any actual sources for this claim then please add it. I'm not signed in right now, but we need to be very careful about not putting conclusions drawn from original research and if you don't think it's based on original research them someone else must be able to access and verify your sources, especially when it comes to medical information on Wikipedia 203.173.25.175 (talk) 11:40, 4 October 2017 (UTC)

I've added a link to the original 2007 article at pub med as well as a review by castori in 2014. Zentomologist (talk) 22:02, 4 October 2017 (UTC)

Proposals and Article Review

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.

Sheaalix (talk) 01:34, 2 February 2016 (UTC)

I know this comment is old, but it is exactly what I came to this talk page to discuss as well. I believe at a minimum, hypermobile EDS, classical EDS, and vascular EDS would meet notability requirements to have their own pages. Grouping symptoms like this page does now is misleading and confusing. Chronicallychill262 (talk) 16:07, 21 August 2024 (UTC)

social obstacles and stigmatization?

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)

Yeah, that's why people get stigmatised: we spend our lives being accused of malingering, often behind our backs, or of "imagining it" with a weird and illogical notion that this somehow is actually a moral fault, precisely because there is nothing to see.

Even if you get diagnosed - and the Western medical profession isn't good with vague, chronic, system-wide conditions - it's hard to get appropriate adjustments from educational establishments and workplaces, and in social situations people with invisible disabilities tend to be regarded as selfish because they can't pull their weight. It's also a fatigue condition meaning it often varies a lot what people can do from day to day and that also tends to lead to the nastiest accusations of pretence. Obviously depends where you are and on your local culture: I have the impression England's particularly bad with this stereotype.

For references, try the recent UN shadow council on energy limiting conditions or the British Ehlers-Danlos society - the latter should take you to the former, actually. Haven't really got time to do it myself and as I have hEDS I'm not the most emotionally uninvolved of people with the issue. FloweringOctopus (talk) 18:49, 16 September 2023 (UTC)

Removed it. No sourcing and NPOV problems with the statement. ShimonChai (talk) 18:25, 23 July 2017 (UTC)

Added back previously removed sentence, explanation why

"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.)

108.170.184.19 (talk) 06:59, 9 October 2016 (UTC)

Ideas to spread awareness through Wikipedia

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)

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)

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)

Secondary sources

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)

Rename page to "The Ehlers-Danlos Syndromes" suggested

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. Zentomologist (talk) 20:00, 21 August 2017 (UTC)

Not done. We tend to use lower case and not plurals. Doc James (talk · contribs · email) 08:43, 23 August 2017 (UTC)

Please understand that the 2017 International Consortium on the Ehlers-Danlos Syndromes DID NOT change the name for EDS. Consortiums have no authority to make any changes in public policy, which includes naming or renaming medical disorders. Consortiums are only groups of like-minded people working toward a common cause for the betterment of the members of the consortium. I can understand how one could easily misunderstand this and think that this group is an official one that has such authority. Consortiums may make recommendations, but they have no authority in this area. They did not and could not rename this disorder. Please see my post below regarding this. It is important to understand public policy, how it is made and who makes it, before determining that new policy has been made by a group of people who have no connection to the people who actually do make policy other than to hope to influence it, and especially before we publish that a medical disorder has been renamed by a group that has no authority to name or rename anything but their own group. I call attention to this sentence that was at the top of the page of the report of the 2017 International Consortium on the Ehlers-Danlos Syndromes: "As part of this work, the terminology of joint hypermobility and related disorders is summarised and a group of hypermobility spectrum disorders is proposed." "Is proposed" is the important phrase. The group is proposing these changes in hopes they are adopted. Finally, the reference you used http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.v175.1/issuetoc, does contain articles that use the plural form. However, there are just as many documents in that online library - if not more - that refer to the disorder in the proper way, as "Ehlers-Danlos Syndrome." Nonetheless, I thank you for your diligent work on Wikipedia, and your good-faith work on this article. I enjoy working with strong editors like you to bring about excellence in Wikipedia. All the best to all of you. MarydaleEd (talk) 02:37, 3 February 2024 (UTC)

References

This page requires a complete overhaul

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:

• Classical EDS (cEDS)
• Classical-like EDS (clEDS)
• Cardiac-valvular EDS (cvEDS)
• Vascular EDS (vEDS)
• Hypermobile EDS (hEDS)
• Arthrochalasia EDS (aEDS)
• Dermatosparaxis EDS (dEDS)
• Kyphoscoliotic EDS (kEDS)
• Brittle Cornea Syndrome (BCS)
• Spondylodysplastic EDS (spEDS)
• Musculocontractural EDS (mcEDS)
• Myopathic EDS (mEDS)
• Periodontal EDS (pEDS)

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).

• Asymptomatic GJH
• Asymptomatic PJH
• Asymptomatic LJH
• G-HSD
• P-HSD
• L-HSD
• H-HSD
• hEDS

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31539/pdf

https://www.ehlers-danlos.com/what-is-hsd/

END

Epilepsy is a group of continues aswell. Yes we could call it epilepsies. We already say "Ehlers–Danlos syndrome (EDS) is a group of genetic connective tissue disorders"

And so does the NIH[2]

Agree the new classification should be paraphrased and added to the classification section. We could even have an article called Classification of Ehlers–Danlos syndrome were we go over how the classification has changed over time. Doc James (talk · contribs · email) 20:16, 22 September 2017 (UTC)

Doc, "Epilepsy" (singular) is the correct name for a spectrum neurological condition. It's the name used by the Epilepsy Foundation and the NIH. Yes, wikipedia could make up its own name, but it wouldn't be the medically correct one.

"The Ehlers-Danlos Syndromes" is the correct current name for a group of connection tissue disorders. The the name used the Ehlers-Danlos Society and the NIH.

Your NIH link above is to an outdated page last edited in 2015 before the terminology was changed (although published this month); I've opened a ticket there to point it out to them.

Here's a current page: https://rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndromes

Correct medical terminology changes over time and always has done. A preference for avoiding plurals isn't a good reason to refuse to acknowledge the change, imnsho.Zentomologist (talk) 22:33, 22 September 2017 (UTC)

Some parts of the NIH use plurals and other parts do not. Doc James (talk · contribs · email) 18:48, 23 September 2017 (UTC)

I contacted Genetics Home Reference at the NIH re terminology. They said "Our materials about EDS are currently being reviewed and updated. They will reflect the new naming conventions for EDS and clarify that it represents a group of related conditions." (direct quote from an email from Stephanie M. Morrison, MPH, to me, dated 23 Sep 2017)Zentomologist (talk) 22:35, 25 September 2017 (UTC)

Okay seems reasonable than. Doc James (talk · contribs · email) 22:41, 25 September 2017 (UTC)

Thanks! Could you l/c the ending "s", please? (I'm assUming typo as I'm fluent myself in both typing and reading typoese :D ) Zentomologist (talk) 23:00, 25 September 2017 (UTC)

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)

Am happy to contribute to this work, given some guidance as to how to proceed. Lfstevens (talk) 08:40, 25 September 2017 (UTC)

The 2017 Consortium of the Ehlers-Danlos syndromes

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.

• The 2017 International Consortium of Ehlers-Danlos syndromes

Also, the Ehlers-Danlos Society has published a number of resources through their site.

• EDS/HSD Info | The Ehlers-Danlos Society

Poeticfeelings (talk) 13:56, 31 January 2019 (UTC)

Please understand that a consortium has no authority to create criteria for EDS types or to create criteria for diagnosis. A consortium is only a group of like-minded people working toward a common goal that it deems advantageous, either for the group, the members of the group or for the public. A consortium has no authority to make public policy of any kind. A consortium can make recommendations. That is all. The Ehlers-Danlos Society is only a group of people who have EDS, who care for people with EDS or otherwise have some interest in EDS. It, too, has no authority whatsoever to make public policy or to change public policy. It can, and does, seek to influence public policy for the benefit of people with EDS. Let's be sure we understand public policy - how it is made and who can make it - before we determine that new policy has been made and publish that here. Thank you for your contributions to Wikipedia and for your interest in this article. All the best to all of you. MarydaleEd (talk) 02:30, 3 February 2024 (UTC)

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inconsistency in use of acronym

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)

These folks use "The Ehlers-Danlos syndromes (EDS)" [4] Doc James (talk · contribs · email) 07:06, 27 March 2018 (UTC)

The figure "The collagen fibril and EDS" is missing a caption for (f)

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)amberckerr

Images too dramatic right now; article images need a comprehensive overhaul

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)

Replying to myself here, but a really comprehensive, multidisciplinary book by an international team of doctors has just come out and is free access:

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)

Overlapping categories of EDS in this article:

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)

Representative photo of elasticity?

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)

I don't know, User:Correctrix, but I tried to re-create this photo on myself (bend arm completely, grab skin over the point of the elbow), and I couldn't pull any of that skin away at all. Elderly people often have looser, thinner skin, so age should matter, but I suspect that this isn't normal. WhatamIdoing (talk) 23:31, 29 May 2020 (UTC)

Since writing that comment, I've come to realise that I almost certainly have EDS, and my idea of normality is skewed by assuming that other people are similar to me. I can grab a few centimetres of skin anywhere on my body. I have most of the signs and comorbidities. Correctrix (talk) 03:17, 1 June 2020 (UTC)

This appears to be representative in <<some>> cases. I checked this with my GF. I have several symptoms, and loose joints run in my family, having been officially recorded in the late 18th century in my direct lineage, and back to the 1400s where my earliest known ancestors originated, however I hadn't realized my skin was unusual so I checked to see if she could do the same, and she couldn't - nor could other people I asked. Neither of us are young but I have no recollection of my skin being tighter when I was. It is loosest on my thighs, where I can pull about 5-7 cm of skin away from the muscle, and my arms where I can pull away about 3 cm. In contrast she was unable to pinch away more than 0.3 cm of skin anywhere. I will be doing a battery of tests shortly (once Covid is over) to confirm the diagnosis. - NiD.29 (talk) 04:26, 1 June 2020 (UTC)

Wow, I’m blown away by how stiff and tight normies can be! I can pull my skin a centimetre on my fingers. Since the above comment, I’ve been formally diagnosed with POTS, my brain MRI shows signs of mild Chiari, and I’ve realised that several minor deformities I have aren’t normal, nor is dislocating joints from just standing up too quickly. I have thoracic outlet syndrome, Raynaud’s, flat feet, neuropathy, myopia, dry eyes, audibly bad craniocervical instability, insensitivity to local anaesthesia, mitral-valve regurgitation, pretty clear signs of MCAS, and I’m now discovering there’s a family history. Correctrix (talk) 08:25, 19 October 2021 (UTC)

proposed changes

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)

Updating Classification Section

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. SRThiel (talk) 17:46, 6 November 2019 (UTC)

References

Rare congenital disease

User:Doc James, I'm not sure that this is the best way to present that information.

• Yes, we give the numbers, but not everyone has enough training in medicine to know that 1 in 5,000 means it's a rare disease. Some of our readers will have very limited math skills. Others are going to guess that 1 in 5,000 is maybe like how many people have a UTI at any given time and think it's common.
• The genes are present at birth, but it sounds like it can't usually be diagnosed at birth. The baby may look entirely typical at birth, especially for milder presentations. (Where does "normal floppy baby" stop and "a bit hypermobile" start?). The "visible" part of the disease develops more clearly later. So I don't think that this version is as clear as the original.

What were you trying to accomplish with this change? Just making it shorter? WhatamIdoing (talk) 23:27, 29 May 2020 (UTC)

I do not think we need both rare and the exact number. But sure if you feel it is important will restore.

We already describe the presentation of symptoms as "These can be noticed at birth or in early childhood.

I joined the "present at birth" bit with the genetics as that is the part that is present at birth, not necessarily the symptoms.

Doc James (talk · contribs · email) 05:09, 30 May 2020 (UTC)

A Commons file used on this page or its Wikidata item has been nominated for deletion

The following Wikimedia Commons file used on this page or its Wikidata item has been nominated for deletion:

• Stevie Boebi & Annie Elainey.jpg

Participate in the deletion discussion at the nomination page. —Community Tech bot (talk) 08:38, 7 April 2022 (UTC)

History

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)

I see the names appear just in the lead paragraph. Midgley (talk) 13:23, 7 July 2022 (UTC)

Gene variations

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)

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Article name/syndrome name

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)

Requested move 3 February 2024

The following is a closed discussion of a requested move. Please do not modify it. Subsequent comments should be made in a new section on the talk page. Editors desiring to contest the closing decision should consider a move review after discussing it on the closer's talk page. No further edits should be made to this discussion.

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)

---

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)

• @Doc James: You moved this page with the edit summary "per talk". I can't see the relevant discussion, was there consensus for a move? If so this needs to go to full discussion. Polyamorph (talk) 09:51, 3 February 2024 (UTC)

  I assume the discussion is Talk:Ehlers–Danlos_syndromes#Article_name/syndrome_name, but given Talk:Ehlers–Danlos_syndromes#Rename_page_to_"The_Ehlers-Danlos_Syndromes"_suggested this is clearly a WP:PCM. -Kj cheetham (talk) 11:30, 3 February 2024 (UTC)

  For reference, the 2017 moves were https://en.wikipedia.org/w/index.php?title=Ehlers%E2%80%93Danlos_syndromes&oldid=802398308 and https://en.wikipedia.org/w/index.php?title=Ehlers%E2%80%93Danlos_syndromes&oldid=802403598 -Kj cheetham (talk) 11:34, 3 February 2024 (UTC)

• Lowercase 'S': A look at the categories that include this page, and related categories, shows syndrome is ordinarily lowercase in Wikipedia article titles. —⁠ ⁠BarrelProof (talk) 20:37, 4 February 2024 (UTC)
• Lowercase S: Wikipedia style is to only capitalize proper names in the names of diseases, syndromes, etc. An intitle search for "syndrome" shows only a few exceptions and most of those should be corrected. I'm not qualified to say if this is a single "syndrome" or a collection of "syndromes". SchreiberBike | ⌨  00:01, 5 February 2024 (UTC)
• Lowercase per Wikipedia:Article titles#Use sentence case. This is a matter of house style. We use title case for Wikipedia:Article titles only when those are undeniably titles (e.g., the title of a book). For everything else, we use sentence case. This is often surprising to readers and editors, but it's what we do. WhatamIdoing (talk) 01:46, 5 February 2024 (UTC)

Relisting comment: Would like to see a consensus on syndromes vs. syndrome. – Hilst [talk] 23:00, 10 February 2024 (UTC)

Note: WikiProject Medicine has been notified of this discussion. – Hilst [talk] 23:00, 10 February 2024 (UTC)

The plural form is used in recent high-quality sources, [5][6][7] and patient groups [8] and therefore acceptable under Wikipedia's rules. The singular is also acceptable. WhatamIdoing (talk) 23:45, 10 February 2024 (UTC)

• Lowercase and plural. Arguments for lowercase are covered above. Plural is an improvement in precision, since more than one syndrome is covered by the article, and that improvement is worth the negligible loss in concision. Per WAID's evidence, the plural is commonly used. Firefangledfeathers (talk / contribs) 17:40, 12 February 2024 (UTC)
• I think consortiums whose purpose is to agree on naming for professionals to use should generally be respected. Although the consortiumn classification page uses a plural title The 2017 international classification of the Ehlers–Danlos syndromes so does the ILAE page titled ILAE Classification of the Epilepsies. There are indeed books titled The Epilepsies but generally the singular is use as a name for this group of quite unrelated conditions that share a symptom provided one defines that symptom broadly. I found a FAQ that made it clear they had proposed changing the name to the plural form. We have clearly in the article adopted their proposed name changes for the sub-types. I don't find the argument by the proposer that there is only one correct form, the singular, and that everyone else, including sources that use the plural, are all wrong. While consortia sometimes propose changes that fail to achieve adoption, this has clearly been adopted by many important sources. One can invent reasons why some names or forms of names are "wrong" or "right". The word "syndrome" is a bit of a pre-genetics terminology that we are now stuck with. One problem for working out whether the singular remains in use is that the singular form is correctly used to describe one of the EDS subtypes. I think for our purposes the plural form in article text makes it clearer when we are talking about all the syndromes or just one type. So I think keep the current name. -- Colin°^Talk 11:53, 13 February 2024 (UTC)
• Lowercase singular eg Ehlers–Danlos syndrome. MOS:CAPS is given voice by WP:AT through WP:NCCAPS. at MOS:SCIMATH (at MOS:CAPS we don't cap terms like X theory or in this case, syndrome. A review of JAMA Network search results for "Ehlers–Danlos syndrome" here indicates it is most often singular, as do the sources used for the article. This is a syndrome within which 13 genetic connective-tissue disorders fall. See also ngram evidence re capitalisation and pluralisation. These resultsfurther support Ehlers–Danlos syndrome. Cinderella157 (talk) 00:26, 15 February 2024 (UTC)
• Lowercase singular. While EDS encompasses a group of related syndromes, and the plural form is not unattested [9], it is completely dwarfed by the singular form [10] (a 7:62 ratio). Lowercase because WP doesn't capitalize "syndrome", "disease", "disorder", etc., in any such condition name or description, since they are usually not capitalized in reliable sources. MOS:CAPS: 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)

  SMcCandlish, I modified my search of JAMA Network to most recent here and checked results for 2023 with no plural results to report. I think this achieves what you are after. Cinderella157 (talk) 06:35, 15 February 2024 (UTC)

  SMcCandlish and Cinderella157, as you note WP:NAMECHANGES policy says we should give weight to sources written after a name change, which occurred in 2017. This means searches of JAMA that include results going back to the 1960s isn't really a fair test, as a possibly archaic form could still hugely dominate. There are also problems where search engines will try to help out by finding both forms. A search on PubMed over the last 5 years for exact text in article titles and abstracts has singular plural giving 1124 vs 172, which is still dominance. However, there is a further complication. If you look at the results of the singular, you get papers like Classic Ehlers-Danlos Syndrome, Hypermobile Ehlers-Danlos syndrome and disorders of the gastrointestinal tract, Vascular Ehlers-Danlos syndrome and Ehlers-Danlos Syndrome Type Arthrochalasia: A Systematic Review which are all sub-types of EDS. I suspect there is still a dominance for the singular among papers that really are using the singular to refer to the group of syndromes, but raw search results are an imperfect analysis. -- Colin°^Talk 12:53, 15 February 2024 (UTC)

  Oh, and Cinderella157's ngram results also wouldn't be fair as the plural change was proposed at the "The 2017 international classification of the Ehlers–Danlos syndromes" and ngram stops at 2019. It can take a couple of years to get a paper published and longer to write and publish a book, so ngram suffers from considerable lag. Plus as I note, ngram would include all the people writing about a sub-type of EDS in the singular result set, when this article is about the 13 disorders as a group. -- Colin°^Talk 15:35, 15 February 2024 (UTC)

  Colin, as I reported to SMcC, in the JAMA search by date, I inspected the results from 2023 and did not find evidence of the plural form at all. Unless there is good evidence to show that the plural form has become established in use, we should use the singular. In short, we follow the evidence of usage. There is no evidence to show that the plural form is established usage. Cinderella157 (talk) 22:55, 15 February 2024 (UTC)

  The important point was that all the earlier searches were entirely unfair and unsafe to draw conclusions from. I'm not sure why the 2023 JAMA search finds nothing (though the second page has Characteristics, Diagnosis, and Management of Ehlers-Danlos Syndromes and strangely the summary in the search results was singular in form). A wider search on PubMed for the last year finds 42 papers for the plural and 272 papers for the singular (with the same caveats I gave earlier, that a fair chunk of that 272 really are papers on sub-types, not the group of syndromes). So I don't think "no evidence of established use" is fair, 42 papers using the plural in the last year aren't nothing. The plural makes up perhaps 20% of papers mentioning the topic in their abstract/title. And is the official position of the consortium who name the sub-types that we happily used in the article body.

  I suspect getting a name change to progress through for this group of syndromes is especially hard in that the conditions impact on almost all parts of the body, so you've got papers by ophthalmologists, and dermatologists and cardiologists and so on. None of them may EDS specialists. Plural is in use, just minority at present. For our purposes, we aren't just a paper mentioning that some of the patients examined had EDS. We are an article specifically on the group of syndromes, and we have sub-headings for each one. Just as a matter of grammar and making it easier for readers to understand, it is helpful imo to use the plural for the group of syndromes and singular for each of the sub-type syndromes. And doing that isn't without support by usage in reliable sources. -- Colin°^Talk 10:28, 16 February 2024 (UTC)

  Where I have said "no evidence of established use", please read routinely use the new name per wording of WP:NAMECHANGES. Cinderella157 (talk) 13:08, 16 February 2024 (UTC)

  I just contracted your "There is no evidence to show that the plural form is established usage". There is evidence of established use, just not majority use. This is a very rare disease, so 43 papers in the last year, using the plural form, is not nothing. Clearly some in the field are "routinely" using the term, perhaps particularly if they are actually EDS experts writing about the set of syndromes rather than a cardiologist mentioning that one of their patients had a specific sub-type of the disease (after all, individual patients can't have a plurality of syndromes). Our naming policy does indeed say Wikipedia "generally prefers the name that is most commonly used" so your opinion is certainly valid. But as WAID notes above, "The plural form is used in recent high-quality sources, and patient groups and therefore acceptable under Wikipedia's rules. The singular is also acceptable." A general preference could be countered by one form, the plural, being actually helpful on an article about a set of syndromes. -- Colin°^Talk 13:49, 16 February 2024 (UTC)

• Lowercase "s". Like WP's downcasing of laws, hypotheses, and many other such constructions. Tony (talk) 11:46, 15 February 2024 (UTC)

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.

Updating to include the 14th variation

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)

Separating into subtypes - discussion

I am a new editor, but very familiar with EDS, and believe a few of the subtypes meet the criteria for notability in Wikipedia and should have their own article. Starting with Classical EDS, here are 5 reviews I found after quick searching. I think combining the signs and symptoms and everything for EDS as whole is very confusing and detrimental to those searching. Among other things, not everyone will have the symptoms listed, as many aren't associated with the type they may be searching for. They each also hold different histories, and I feel the small paragraphs many subtypes are given are not giving the most complete picture of the topic at hand.

1. [11] multisystemic manifestations (this is more natural history, so it might not count as a review)
2. [12] cEDS due to COL1A1 p.(Arg312Cys) (COL1A1-cEDS)
3. [13] cEDS research review
4. [14] Dermatology review, includes cEDS
5. [15] Wound healing review

Does anyone else have thoughts and input on this? Chronicallychill262 (talk) 16:43, 21 August 2024 (UTC)

What classification scheme would you use? My take is that although there is a prevalent classification scheme (e.g., the one summarized in the current Wikipedia article), it is not so dominant that other classification schemes should receive no mention. That makes it difficult to create clear sub-articles, as one might need a sub-article for each subtype under each classification scheme, which would result in overlapping content, as the Venn Diagrams of causes, pathophysiology, and symptoms overlap substantially.

To summarize, OMIM does not agree with Wikipedia and other sources. OMIM uses “classic EDS” whereas other sources use “classical EDS”. The confusion does not just arise from the extra letters “al” at the end of “classic”. Each source has different sets of genes assigned. The Wikipedia article has two distinct subheaders for “classical EDS”. The two subheaders are Classical-like EDS (clEDS) and “Classical EDS (cEDS)”. If you read both subheaders sections of the EDS article, a different set of genes (without any intersections) is listed in both. And the answers don’t align well with what is in OMIM. There is also the slightly different classification on some British sources, and on an NIH GARD webpage: https://rarediseases.info.nih.gov/diseases/2088/classical-ehlers-danlos-syndrome Jaredroach (talk) 18:20, 21 August 2024 (UTC)

I don't have a new classification scheme, but moreso that there are subtypes that have enough information published that would warrant their own articles, or sub-articles. When searching the syndrome, even as someone knowledgeable, I feel this page gives conflicting information that doesn't make it clear each sign and symptom is not automatically present with every type of EDS, which could cause undue panic or worry in someone newly diagnosed visiting this page. The alternative is building out this page further, but it feels like it would get clogged down quickly. The genetics section alone could be built out for a few of the subtypes that have published information on the mechanism of mutation or effects of the mutation vs just listing the genes alone and a general summary of what a mutation might mean. I'm working on building out an article for another ultra-rare disease as part of a WikiEdu course I'm in, but this one caught my eye in the process of learning editing.

Classic was the original name, back under the numbered typing system, which is where it has been maintained in some articles. The 3rd article I shared in the original discussion states "Classical EDS (OMIM #130000)" - however, you are correct in that this entry leads back to Classic EDS and then lists the former names as well, so that is confusing and I don't know the proper editing rules to proceed. And Classical-Like EDS is an entirely separate subtype with TNXB mutation. I'm not sure that more rare subtype would meet criteria for notability or not.

I tried to follow talk section a few above this to track a similar conversation on naming conventions, but wasn't exactly sure where it landed. How does Wikipedia handle name changes in terms using source material that might reference the name at the time of publishing?

I can definitely add edits to my list as I learn, I just wasn't sure if the best way was to build out this article and make it kind of clunky, or work to separate sub-articles for the few types that would have enough sources to achieve notability (which I believe wouldn't be anywhere near all 13). Chronicallychill262 (talk) 19:06, 21 August 2024 (UTC)