Talk:Ehlers-Danlos syndrome

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

Contents

[edit] 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.

[edit] 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 [1] 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)

[edit] 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.

[edit] 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)

[edit] 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:
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)

[edit] 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)

[edit] 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)


[edit] 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)

[edit] History

doi:10.1111/j.1365-2141.2008.06994.x historical review oddly in a haematological journal. JFW | T@lk 23:58, 7 May 2008 (UTC)