Talk:Ehlers-Danlos syndrome

Some text in this article was originally taken from http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome (public domain)

Plagiarism
Hi, I noticed the "Prognosis" section appears to have been lifted wholesale from another site. Particularly bad as the tone of this text is at times not really encyclopaedic. Perhaps it could use a clean-up if anyone has good references for this info? —Preceding unsigned comment added by 93.97.29.181 (talk) 14:46, 20 April 2009 (UTC)

ednt.org
ednf.org says there are six types, not ten


 * Please correct it, with a good reference. JFW | T@lk  08:50, 12 Oct 2004 (UTC)


 * OK, well done. JFW | T@lk  08:51, 12 Oct 2004 (UTC)

Actually there are 10 forms. I myself have got this and 1 to 6 are the known forms and 7A, 7B and 7C are forms whom they still don't know if it really is a different form, because their are only a few people how got that form.

Accuracy questioned - Source requested
Bone deformations such as pectus excavatum (sunken chest) from extra-rapid bone growth may present early.

That is accurate for Marfan Syndrome, another connective tissue disorder, but I question whether it it true of EDS. Source? Paleorthid 16:28, 2 Feb 2005 (UTC)


 * I found this source linking ED and PE, but it is kind of a "non-mainstream" nutrition-is-everything site. Gzuckier 16:00, 19 December 2005 (UTC)


 * I have a friend with ED, who would be expected to know of such things, and she said that she has never heard of pectus excavatum being a symptom herself, so if PE is a known symptom, it would be reasonable to assume it is rare.

It is not known whether some of the genetic variation represented by the various subdisorders of Ehlers-Danlos syndrome or other connective tissue disorders might not represent survivals of genes (rather than more recent harmful mutations of genes) which genetic variations were not problematic before humans began cooking meat a half-million years ago, or ceased using meat jerky and raw milk, thus eliminating sources of raw collagen from the human diet.

This appears to be highly speculative. Wouldn't digestion destroy raw collagen regardles of cooking? Source? Paleorthid 16:28, 2 Feb 2005 (UTC)


 * I can't imagine any circumstances where collagen from the diet could possibly be utilized without being broken down into amino acids. Plus, there isn't any collagen in milk. Gzuckier 05:38, 3 Feb 2005 (UTC)

DONE--> I'm going to rewrite the entire symptoms intro paragraph unless someone really has an issue with it. It's muddled and confusing, filled with Marfan's symptoms (e.g., lens dislocation), trivia (celebrities), and weird, unnecessary statements (the whole thing about the conference and which symptoms should be considered "real" EDS). Walking Softly 16:36, 20 October 2007 (UTC)

Speculative Statement Removed to Talk Page
It is not known whether some of the genetic variation represented by the various subdisorders of Ehlers-Danlos syndrome or other connective tissue disorders might not represent survivals of genes (rather than more recent harmful mutations of genes) which genetic variations were not problematic before humans began cooking meat a half-million years ago, or ceased using meat jerky and raw milk, thus eliminating sources of raw collagen from the human diet.

retro-edit
I restored a big hack-job from last october, but now the subsequent edits like the infobox have to be readded. I'll do some too if nobody does them first. Gzuckier 15:53, 19 December 2005 (UTC)

Photos
I am removing the "eric the midget" photo. I am far from sure it is appropriate here. The editor who put it in cited no sources. The filename is offensive. There is no evidence presented here that this is a useful mainstream illustration relating to EDS. I cannot see how a celebrity photo is likely to be useful and informative here. If I am wrong on some or all of this do please educate me. 82.45.248.177 18:45, 10 July 2006 (UTC)
 * I've re-deleted the image. If there is a verifiable source that he has EDS, please provide it. If not, please do not re-add it to the page. Sue Anne 22:55, 13 July 2006 (UTC)


 * I'm not stating whether I think the picture is necessary, but that it is well known and documented that Eric suffers from this disease. Here are three sources:
 * marksfriggin.com (It's on the 6/28/06 listing.)
 * Eric's myspace page
 * howardstern.com (This does not state that he has the syndrome but mentions his request for Howard Stern to donate $250,000 to the Ehlers-Danlos National Foundation.) Foday 06:19, 14 July 2006 (UTC)


 * I've removed the "eric the midget photo" for copyright infringement and I am opposed to it being returned into the article. That eric has EDS is not critical to my opposition. The image serves the reader very poorly as to conveying an understanding of the appearance of EDS. For one, the image source doesn't use the image to illustrate that particular point, making it a low quality source. For another, the reader cannot determine where EDS symptoms end and the condition of being a very small person begins, rendering the image useless. -- Paleorthid 20:05, 16 July 2006 (UTC)


 * Absolutely. As stated above it is a celebrity photo with an offensive filename. It is impossible to understand why it should be in the article. I will delete it every time I see it: I have nothing to lose on wikipedia so banning me for reversions is no threat. If people want an EDS photo they can find a better one - if it exists (lots of people with EDS do NOT look different from those without) and one without an offensive filename. Using this one is lazy, offensive and stupid and those wanting to should be ashamed of themselves. 138.37.199.199 07:55, 17 July 2006 (UTC)


 * Get off your high horse. I'm not saying that the photo belongs in this article, but you don't have to slam Eric the Midget or the file name of the photo. Yes, Eric is a celebrity, and he is known as "Eric the Midget"; the file name is simply descriptive. Foday 16:35, 17 July 2006 (UTC)

As the original poster I'd like to direct your attention to the picture of The Elephant Man on the neurofibromatosis and Proteus_syndrome pages. If the photo needs additional context to justify its inclusion I can work on that. Please remember that Eric has one of the most sever forms of this disease, and he is the only reason that millions of people even know it exists.


 * Can the copyright infringement issue (see above) be satisfied? If not, weighing justification for inclusion is meaningless. This photo violates wikipedia policy. -- Paleorthid 18:34, 20 July 2006 (UTC)

The photo of the dog is entirely unhelpful. I don't know WHAT is going on in it. It looks like a dog's tail to me. So I deleted it. I found a much better image of a dog with EDS online, but I can't just swipe it.Walking Softly 20:35, 20 October 2007 (UTC)

I will upload some EDS hypermobility pix when I get a chance. In the near future, EDNF will have a VERY extensive photo library of EDS online. In the meantime, no pictures are better than crappy, misleading ones. EDS is doing its photo library b/c there actually isn't much online that's good. Even the Mayo Clinic's pix are weird and almost wrong. People looking for pix can follow the links at the bottom of the page. Walking Softly 16:43, 20 October 2007 (UTC)


 * I dropped in some of the hypermobility pictures I found uploaded to the commons, but it would be really great to find a clear example of hyperextensible skin. I can't seem to find a good public one to place. If anyone can add it, that would make a great addition. I know there are some pitures of a puppy with relatively remarkable hyperextensibility pictures on the commons, but it's not quite the same. I think pictures of the human condition would be more appropriate. Chaldor (talk) 22:43, 21 September 2008 (UTC)

Sleeping with eyes open
I'd really like to see the citation for this. I have the hypermobility type and I sleep with my eyes open, which causes corneal thickening. I've always assumed that it was related to ED, but this is the first reference that I've seen. Ninquerinquar 00:36, 28 July 2007 (UTC)

Sleeping with your eyes open is just something people with proptosis (large protruding eyes), nerve damage, and a variety of other conditions tend to do. Note that many people with vascular EDS (the type Cathy Bowen's child had which is where this quote came from) have proptosis. People with other types of EDS have proptosis just because a certain percentage of the population happens to have proptosis (i.e., besides those who have it b/c of a medical condition such as Vascular EDS, Graves disease, etc.). It's kind of nonsense to include here, so I removed it. If someone has proptosis, then asking them if they sleep with their eyes open is a silly follow up DIAGNOSTIC question. It is a good clinical exam question, though, b/c ANYONE who sleeps with his/her eyes open should be seeing an ophthalmologist, getting ointment to put in their eyes nightly, and maybe even patching their eyes. As you noted, sleeping with one's eyes open is not good for the cornea. But it has nothing to do with EDS *directly*--at least not that I've seen in any paper. Hope that helps. Walking Softly 17:41, 20 October 2007 (UTC)

Dear Walking Softly, I think you might be wrong with what you stated about proptosis. As my son didn't have protruding eyes and many other's with all types of EDS (that do sleep with their eyes half open) don't have that problem either. The actual "medical term" that I was referring to, is called; "Nocturnal Lagophthalmos, otherwise known as “sleeping with your eyes open.”

According to my research over the last 12 years, this is very common among many with EDS. And some Vascular types might have large "almond shape" eyes, but those I've seen don't have the typical large protruding eyes as you stated. We will just have to wait and see...if eventually a *doctor* takes the time to research and document this finding...then that would make it a FACT...right? Just because a doctor hasn't written a journal article that includes this finding, doesn't mean that it can't be directly related to having a connective tissue disorder...like EDS. Cathy Bowen —Preceding unsigned comment added by 141.150.180.233 (talk) 06:59, 1 September 2008 (UTC)
 * yeah, but in reality there are a vast number of things, even important ones, which are not researched for one reason or another. i came to realize relatively recently that the way we do insurance in the US tends to make it harder to do EDS research, in that wise patients and wise doctors are reluctant to identify somebody with a mild variant of EDS as such, given that the insurance companies (correctly, from their perspective) see anyone with the severe forms of the disease as a large financial drain and will take pains to avoid insuring them; thus identifying oneself as a sufferer with even just a mild form means taking a certain risk of being lumped in and having difficulty finding insurance coverage. this in turn means that research on things such as your observation re sleeping is going to have a harder time finding subjects other than those with undeniable severe cases, which is not the situation a researcher wants to see; they'd prefer to see a nice gradation of subjects from very mild to severe, in hopes that the effect they are looking for will show a corresponding gradation. Gzuckier (talk) 17:33, 3 September 2008 (UTC)
 * Dear Cathy Bowen- First, thank you for all your work spreading the word about EDS. As for the topic at hand, I do not deny the possibility that many with EDS have nocturnal lagophthalmos.  What I should have made clearer is the fact that nocturnal lagophthalmos is very widespread--among MANY sorts of people, not just those with EDS.  If the goal is to diagnose more people with EDS (especially vascular EDS) prior to disaster striking, I would argue that it would be more helpful if the more established criteria were better publicized and better understood by a wide range of physicians than for a laundry list of "has been noted but not studied" to be put out there.  Journal articles are being published all the time on the subject of Ehlers Danlos.  In my humble opinion, it would be dangerous for Wikipedia to try to be ahead of peer-reviewed journals.  In fact, I believe it is the policy of Wikipedia to require citations for all facts so that pages do not merge into the realm of speculation.  That said, I will provide you with a link to a 2006 study demonstrating a link between those with classic EDS (COL5A1 and COL5A2 mutations) and floppy eyelid syndrome.  Combining that info with the studies showing links between floppy eyelid syndrome and nocturnal lagophthalmos, one could easily argue for a link between EDS and nocturnal lagophthalmos.  However, please note that there are MANY OTHER CAUSES floppy eye syndrome besides EDS.  See the following for more info:
 * "Floppy Eyelid Syndrome" from the Handbook of Ocular Disease Management []
 * "Structural abnormalities of the cornea and lid resulting from collagen V mutations" pubmed abstract[]
 * "How to diagnose and treat patients [with lagophthalmos]" from EyeWorld--Not a great source for scientific findings, etc., but this is a decent description of lagophthalmos []
 * "Sleep disorders and the eye" pubmed abstract [] Walking Softly (talk) 04:13, 2 January 2009 (UTC)

Hi Walking Softly: Sorry I am just seeing this now.I wanted to share these links Your eyes and EDS - What is truth, what is myth? By Dr. Diana Driscoll

//youtu.be/LZOGLhD7ZZ4

//prettyill.com/videos/watch/your_eyes_and_eds_what_is_truth_what_is_myth

She speaks about "sleeping with eyelids open" as being linked to connective tissue issues. Other then sleeping this way, those with EDS do not have floppy eye syndrome. They are able to control their eyelids when they are awake, they can completely shut and open them. Many people with EDS do not have proptosis (large protruding eyes), nerve damage, or any other conditions tend that causes this, other then having Ehlers-Danlos Syndrome and other related connective tissue disorders. I have a couple other links that I will be adding on this subject. Thank you.

convert / add a table form for symptoms for faster reading.
a table form for symptoms would be easier to quickly read. Can we add that somehow? Tkjazzer 23:42, 6 September 2007 (UTC)

Hi, Paganini is told to be a case of Marfan's syndrome, not Ehlers Danlos. Please, double check it. Jan —Preceding unsigned comment added by 195.113.65.4 (talk) 11:52, 7 October 2007 (UTC)

Misdiagnosis and general lack of knowledge among phyisicians?
Personally, I'd like to see the article expanded to reflect upon the fact that it's not very well known even among physicians (Despite being fairly "common"), has often been misdiagnosised as rheumatic or other diseases, and danger during urgent surgery. Would this be a good idea? Tubba Blubba (talk) 03:13, 6 May 2008 (UTC)


 * Can you find a reliable source that makes this claim? If so, then it would be fine to expand on that point.  WhatamIdoing (talk) 23:23, 6 May 2008 (UTC)

History
historical review oddly in a haematological journal. JFW | T@lk  23:58, 7 May 2008 (UTC)

shouldn't the types be roman numerals?
i think so. says so in medical text. please confirm before we change. —Preceding unsigned comment added by 207.151.245.128 (talk) 23:46, 27 October 2008 (UTC)
 * That's a matter of style, not accuracy. Either approach is correct, and the simplicity of actual numbers is probably preferable.  Not every reader of the English Wikipedia will have learned Roman numerals.  WhatamIdoing (talk) 03:53, 28 October 2008 (UTC)

Tone, objectivity, accuracy questioned
Revision as of 18:28, 20 March 2009: "It is a very serious, sad disease that can in some cases lead to death. Because of its rarity, not many doctors or specialists are even familiar with the disease, making a cure very difficult to conjure. Many with the disease suffer from a great deal of pain at all times. In some cases, a medication labelled Tremadol can be used to help minimize pain. However, not all types react favorably to it, and it should therefor be clarified with a specialist before taking the medication."

This does not seem objective nor does the tone seem appropriate. I also question the Tremadol accuracy. EDS patients use a variety of medications. Jdybka (talk) 02:37, 24 March 2009 (UTC)
 * Hm, I missed that edit. Agreed, and so reverted. Thanks for pointing it out. Maralia (talk) 02:50, 24 March 2009 (UTC)

Image
From NIH, claimed to be type IV: -- C opper K ettle  09:00, 4 May 2009 (UTC)
 * I don't know why this pic is here. This pic is supposed to be showing a patient with the BLUE SCLERA from EDS TYPE VI (not IV).  Case 464 at the same site does a much better job of demonstrating the blue sclera.Walking Softly (talk) 10:58, 11 May 2009 (UTC)

External links to avoid
Removed the link to http://librarianinblack.typepad.com because links to blogs are to be avoided according to point 11. of External_links_to_avoid. Langhorner (talk) 14:37, 2 June 2009 (UTC)


 * The specific link was Hello. My Name is Sarah, and I Have Ehlers-Danlos Syndrome. --LegitimateAndEvenCompelling (talk) 04:07, 3 June 2009 (UTC)

Removal of types
An anon has removed the detailed explanation of the various subtypes of this syndrome in this edit. They have also made what appear to be useful edits to this article, so I do not believe it is vandalism. The material removed had some inline references. Could someone with better knowledge of the syndrome please review their edits.- gadfium 19:38, 23 August 2009 (UTC)


 * Removing the information was not, IMO, vandalism, but was probably unwarranted. It could use a good copyedit and some effort to round up a few more sources, though.  WhatamIdoing (talk) 00:15, 19 October 2009 (UTC)

Accuracy questioned
in the intro section: "The collagen in connective tissue helps tissues to resist deformation (decreases its elasticity). In the skin, muscles, ligaments, blood vessels, and visceral organs collagen plays a very significant role and with increased elasticity, secondary to abnormal collagen, pathology results." I found this confusing; is it just me?

in the Signs section: "In each case, however, the signs are ultimately due to faulty or reduced amounts of Type III collagen." However,the article further states that Ehlers-Danlos syndrome can be caused by faults in other types of collagen as well. Jdybka (talk) 06:32, 16 March 2010 (UTC)


 * When you think something needs clarity, feel free to look it up on a variety of sources before asking about whatever questions need to be answered. Wikipedia is a wiki, so anyone can edit almost any article by simply following the  link. You don't even need to log in. (Although there are some reasons why you might like to do so...)

The Wikipedia community encourages you to be bold. Don't worry too much about making honest mistakes&mdash;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 try out the sandbox to try out your editing skills. New contributors are always welcome.

Places to start researching include (but are not limited to):
 * Any search engine, such as Google or Yahoo
 * Google News for recent events
 * Google Books which offers scanned copies of books
 * Your local library; PublicLibraries.com lists public libraries by U.S. state; UK Public Libraries lists public libraries by the regions of the United Kingdom
 * If you're just looking for answers to your questions, you can try the Wikipedia Reference Desk, although reliability is not guaranteed and answers given should not be used as resources for any academic paper or encyclopedia article.

WhatamIdoing (talk) 21:29, 16 March 2010 (UTC)

Benign joint hypermobility syndrome
About this:

I'm not sure that your assertion is true. Some sources say that BJHS is simply another name for EDS III.

See, for example, which concludes that "There is no reliable method of differentiating between Joint Hypermobility Syndrome, familial articular hypermobility and Ehlers-Danlos syndrome (hypermobile type), suggesting these three disorders may be different manifestations of the same spectrum of disorders" -- in short, that they're probably the same actual disease, just under slightly different appearances.

goes further, and says that there is "compelling evidence" that BJHS is a forme fruste of EDS III, and that the "widely held view" is that BJHS is "identical with" EDS type III.

On the other hand... the labels seem to be used differently in practice, and I'm not sure that the specific definitions are really properly settled. It would be nice to have a really stellar source, like a consensus statement from a large specialist organization, to give us some direction here. WhatamIdoing (talk) 00:04, 1 May 2010 (UTC)