Talk:Marfan syndrome

message: From the article:
:Other reported symptoms are eye lenses falling out, and the inability to see objects moving in a direct line at the watcher. Some belief that the biblical story of Goliath is based on a man suffering from Marfan syndrome, which would explain his unusual height, and why he did not avoid a stone thrown at him.
Really? Evidence for all these assertions, please.
:Oh I'm sorry! That's is acromegaly! Compare . --Magnus Manske~
the wikipedia article on chromosome 19 lists marfan's as a disease of that gene. this article gives chromosome 15 as responsible for it. one of them must be correct. which is it?Cleobolus (talk) 17:23, 6 September 2009 (UTC)
thread_title:  Eyes 

message: This entry and the one on Marfan's syndrome clearly cover the same subject, so it would be good to unify them. -- Arteitle 06:50, 13 Sep 2003 (UTC)
thread_title:  Merger 

message: The Lancet, Current Issue, Volume 366, Number 9501, 3 December 2005
:has three articles about it. Anyone up to the job? JFW | T@lk 00:11, 4 December 2005 (UTC)
thread_title:  Lancet 

message: Works in mice: Habashi JP et al. Science. 2006;312:117-121 JFW | T@lk 23:39, 2 May 2006 (UTC)
replies: text: Works in humans: Brooke BS et al. NEJM 358:2787 Nbauman (talk) 22:58, 28 June 2008 (UTC)
replies: text: The reference 34 (Freeman, Elaine (Fall 2007). "A Silver Bullet for Blake". Johns Hopkins Magazine.) appears to be a magazine article about a young boy with Marfan's and the biography of the man leading the trial about losartan rather than a ?more reputable source. Perhaps it should be removed considering there are the resources mentioned above? RM 134.36.52.168 (talk) 00:40, 22 February 2013 (UTC)
thread_title:  Losartan anyone 

message: It is not proven that Jeffry Hyman AKA Joey Ramone  had this syndrome.
:I removed his name from the list. His brother has claimed in his biography and in multiple interviews that it was never diagnosed and that he didn't have it. The source on this article was from an interview with a woman with Marfan's who mentions Ramone. It's hearsay at best. --Utilizer (talk) 05:50, 8 August 2010 (UTC)
replies: text: Speaking of "Famous Sufferers" of Marfan's, I find it doubtful that Osama bin Laden has Marfan's syndrome when his own Wiki page does not support the claim. Also, this site here (http://meaindia.nic.in/bestoftheweb/2002/04/17bow01.htm , simply CTRL + F (Marfan) and you'll find the relevant paragraph) does not support the statement, as it concludes there is no firm evidence for the claim (Another site cites that page to support that fact that it is unlikely he had it). Another site simply says he does (Without any evidence, and I am doubtful that any websites can qualify as primary sources... D: ). Another Wiki Page says this :Rumores dizem que Osama bin Laden também tem a Síndrome. Or, roughly translated, Rumours say that Osama has this syndome. The evidence seems to be, on the affirmative: Osama is lanky and tell, a bit like Lincoln (Or apparently Kerry). On the negative: Most people suffering from Marfan syndome are not likely to have well developed musculature. 24.89.197.136 01:40, 23 November 2006 (UTC)

text: This section is somewhat problematic, I tagged it as needing sources. We need them for everything, but doubly so when we start diagnosing people who are still alive... - cohesion 02:55, 2 December 2006 (UTC)
thread_title:  Famous People 

message: I added this to the requested articles list.  Anyone care to take it on?  I suffer from it, but am not a medical practitioner.  So I'm looking for professional knowledge, not just web references that I can find on my own.
: Dural ectasia --WS 22:57, 27 November 2006 (UTC)
thread_title:  Dural Ectasia 

message: I did some major revising of the symptoms section.  I felt it read too much like a description of the disease, and not a description of how the symptoms present themselves.  A paragraph still needs to be added on pneumothorax, because this is sometimes the first sign/symptom to show itself in individuals with the disease.  The section also needs to have more references added.
Leeirons 02:50, 5 December 2006 (UTC)
thread_title:  Symptoms 

message: People have said that Osama Bin Laden has it?
Could this be true? He certainly shows symptoms of it, also John Kerry does, but this isn't proven anywhere. —The preceding unsigned comment was added by 84.71.226.21 (talk) 22:01, 14 December 2006 (UTC)
replies: text: We need a better reference than the one currently used, as it actually states that Osama died of Marfan's in 2001. LWG talk 14:10, 5 May 2011 (UTC)
thread_title:  Bin Laden? 

message: This list used to be very long and then was trimmed down due to lack of citations.  It is beginning to grow again.  I recommend that each new name should include a citation, or don't even bother adding it. Leeirons 14:45, 19 December 2006 (UTC)
replies: text: I added citations for the three that were missing them.AlexMc 08:15, 20 December 2006 (UTC)
replies: text: And added one person along with citation. AlexMc 08:31, 20 December 2006 (UTC)

text: Pulled the only non-notable person off the list. Hint: if they're not on Wikipedia, they're probably not all THAT prominent...--MattShepherd 20:57, 19 January 2007 (UTC)
replies: text: I think i read in a book that a famous violin player... Paganini or Pa... i forgot the name :( It was said that he was able to play in very awkward ways because he could overstretch his fingers a lot. Maybe someone of you guys finds the book, its almost 10 years since i read that and i read it only once :/ all i know was that he was a great violin player of his time (i think he was italian but i aint sure..)  —Preceding unsigned comment added by 80.108.103.172 (talk) 00:18, 10 November 2007 (UTC)
replies: text: Niccolò Paganini is indeed said to owe his virtuosity to Marfan. Riyadi (talk) 20:36, 23 November 2016 (UTC)
thread_title:  Well Known Persons 

message: The pharoah link is dead, though I also heard this assertion at the King Tut travelling exhibit. Does anyone have a new link for this information?
Johhny "Appleseed" Chapman may have had it also.
71.202.53.228 (talk) 22:59, 17 February 2011 (UTC)
thread_title:  Pharoah 

message: I think the article should be considered for the WPCD again as it has been a WikiProjects Medicine project of the week and has had a lot of improvements. Snowman 10:53, 4 February 2007 (UTC)
thread_title: WPCD

message: 50px|right
I'd just like to say that editors here have done a stellar job on the article. It is written in an intelligent but not alienating tone and provides a lot of information about this disorder.
Many of our health and medicine related articles I come across are incomplete and/or written at either a far too academic, or kindergarten level of explanation. This is very comprehensive. And well presented to cap it off.
My only criticism at present is that it lacks any footnotes in the the "symptoms" section.
Good job guys.--ZayZayEM (talk) 06:01, 5 December 2007 (UTC)
thread_title:  Nice work 

message: I followed the two references that follow the sentence "Abraham Lincoln was once believed to have suffered from Marfan Sydrome, although recent research has argued that he probably did not.[28][29]".  It turns out that neither of them conclude that he did not have Marfan's.  They only note that there is some debate.  Therefore this seems like a mis-citation.yes it does   —Preceding unsigned comment added by 68.90.245.210 (talk) 04:48, 15 December 2007 (UTC)
thread_title:  Not clear whether Lincoln should be excluded 

message: apparently lists the most recent diagnostic criteria. JFW | T@lk 00:42, 18 February 2008 (UTC)
thread_title:  Ghent criteria 

message: My step dad, like his famous brother John Tavener, has Marfan syndrome, as does his son. Both my step father and step brother have a condition called hammer toes where their toes grow out at slightly perpendicular angles. They tell me that this is a common condition for Marfan sufferers, but it's not listed in the symptoms page so I'm adding it.Juggertrout (talk) 00:18, 17 August 2008 (UTC)
thread_title:  Hammertoes 

message: The listing of living people who are "believed" or "suspected" to have Marfan syndrome should be modified to list only those people who have been diagnosed with the condition.  We have seen how journalists can turn a few symptoms into a diagnosis.  WP:RS and WP:BLP should apply here.  Kablammo (talk) 19:18, 18 August 2008 (UTC)
replies: text: I have modified the section to eliminate those "believed to have" the syndrome, and expanded the hidden comment to require a valid reliable source confirming an actual diagnosis.  Wikipedia should not engage in speculation nor repeat speculation, particularly about living persons.  Kablammo (talk) 02:25, 20 August 2008 (UTC)
replies: text: As the "speculative claims" section continued to attract rumors concerning living persons based on irresponsible "journalism", and as many of the names of historic figures had no citation, the list has been eliminated and only those names which are cited to a source have been retained.  Kablammo (talk) 02:05, 7 January 2009 (UTC)

text: Does anybody know about Mick Fleetwood of Fleetwood Mac? I'm a 195cm Marfanic myself, and on some older album covers Fleetwood looks taller and thinner than I (he's been cited as being 198cm tall), with pectus excavatum and very thin arms and wrists. Harjasusi (talk) 14:47, 22 April 2009 (UTC)
replies: text:  See WP:MEDMOS and WP:MEDRS; a very reliable source would be needed at any rate.  SandyGeorgia (Talk) 15:04, 22 April 2009 (UTC)
thread_title:  People "believed to have" Marfan's 

message: This 2008 review is available online and could be used to revise, update the article. I've added it to the Epidemiology section with refname=PMID18506019 . SandyGeorgia (Talk) 02:23, 17 January 2010 (UTC)
thread_title:  Free full-text review 

message: I have reverted this addition, because it misrepresented the source.  Whether correctly written text could be added to the article is open to consensus; I don't see a need for it. (See above section.)  SandyGeorgia (Talk) 19:12, 17 January 2010 (UTC)
thread_title:  Phelps again 

message: From the article:
:"In addition to being a connective protein that forms the structural support for tissues outside the cell, the normal fibrillin-1 protein binds to another protein, transforming growth factor beta (TGF-β).[2] TGF-β has deleterious effects on vascular smooth muscle development and the integrity of the extracellular matrix. Researchers now believe that secondary to mutated fibrillin there is excessive TGF-β at the lungs, heart valves, and aorta, and this weakens the tissues and causes the features of Marfan syndrome."
These two pieces of information are contradictory and really don't make any sense at all.  If it is true that in the Marfan disorder that TGF-β has deleterious effects on the ECM in the lungs, etc, then why on earth would normal fibrillin-1 bind to TGF-β and thereby have it end up causing problems in these tissues.  I think that it should read "Mutated fibrillin-1 binds to TGF-β resulting in abnormally higher levels of the latter in these tissues resulting in the observed symptoms and phenotype..."  Normal obviously means wild-type and would emcompass unaffected individuals.  Can we have a better reference to primary literature or have a primary researcher opine please?
OK, nevermind, The latter paragraph explains it better, but this should be more smoothly and eloquently described earlier, but another suggestion to change to make it more clear:
Transforming growth factor beta (TGFβ) plays an important role in Marfan syndrome. Fibrillin-1 indirectly binds a latent form of TGFβ keeping it sequestered and unable to exert its biological activity. The simplest model of Marfan syndrome suggests that reduced levels of fibrillin-1 or more precisely haploinsufficiency (less wild-type fibrillin-1 capable of sequestering the TGFβ along with more of the mutated fibrillin-1 that is incapable of doing so) allows TGFβ levels to rise due to inadequate sequestration. Although it is not proven how elevated TGFβ levels are responsible for the specific pathology seen with the disease — Preceding unsigned comment added by 1PhDScientist1 (talk • contribs) 15:23, March 13, 2010
:I'm a bit unsure about some of the genetic information in this article.  Isn't the evidence itself still rather uncertain still?  Maybe we should cut back the more specific claims?  — Preceding unsigned comment added by Flatronal (talk • contribs) 14:37, 6 August 2011 (UTC)
thread_title: Unclear Information

message: The first sentence: 'Marfan syndrome (also called Marfan's syndrome) is a genetic disorder of the connective tissue.' is wrong.  A syndome (Marfan's or any other) is just a collection of symptoms.  It is not a genetic disorder of anything.  A genetic disorder may cause a syndrome.  —Preceding unsigned comment added by 81.131.69.219 (talk) 17:10, 18 September 2010 (UTC)
replies: text: I can assure you that the article is titled with the most commonly used name in medical publications. Also, the definition of a syndrome is not as restrictive as you say. As our wikipedia page points out, there is also Down syndrome (i.e. a genetic disorder) and many others. Lesion (talk) 22:20, 28 May 2013 (UTC)
thread_title:  'Syndome' confusion 

message: Please read WP:MEDRS; we don't report medical speculation from the laypress.  Unless a reliable medical source discusses bin Laden and Marfan, please do not add it here. A ten-year-old speculative report from salon.com is not a reliable medical source, nor is the article even remotely conclusive.  The BBC is another laysource that frequently gets medical information wrong, and even they say that the Marfan reports are "sketchy" and "wishful thinking".  These are not the kinds of sources we use to report medical info, particularly when the accounts are sketchy.  SandyGeorgia (Talk) 13:34, 6 May 2011 (UTC)
thread_title:  Osama bin Laden 

message: While working on the former 2 articles, I found that dural ectasia can cause UI and FI, and is according to this article is one of the diagnostic criteria of this condition. Since these are major symptoms that might be the first presenting feature (people tend to notice them rather than many of the other symptoms listed here), maybe this should be mentioned in brackets after mentioning dural ectasia? Just a thought. First ref I found, listed on pubmed as a review, but looks like a case report, not sure if we can use it...Lesion (talk) 14:06, 5 February 2013 (UTC)
thread_title:  [[urinary incontinence|urinary]] & [[fecal incontinence]] secondary to [[dural ectasia]] in marfanoid syndromes... 

message: After a very brief search I could not find any MEDRS source to support any statement about intelligence in Marfan syndrome. Of the 2 sources currently used, 1 is some kind of popular blog and the other a primary source, neither is MEDRS imo. Lesion (talk) 10:34, 27 April 2013 (UTC)
thread_title:  Recent edits about intelligence in Marfan syndrome 

message: Austin Carlile of the metalcore band Of Mice & Men has the disease. His mother had it also, and passed away due to it.[62]
How notable is this? and for that matter other "trivia" in the society section. It reads like a mixture of actual notable historical individuals - e.g. Lincoln, inter-spaced with trivia about non notable people. In MEDMOS it states that trivia sections should be avoided, and this society and culture section is really just a random list of people who have (or who are thought to have) marfan's syndrome. This is not what the society and culture section is really for. I think some of these people are living too.
Vincent Schiavelli, an actor and spokesperson for the National Marfan Foundation.
--I read the link and this person did not die of aortic dissection as suggested in the content. There is no info about how they contributed to public awareness about marfan's, please provide a proper source for this statement. Potentially this person is notable to include but the source provided is not suitable for the statement above.
I am removing what I feel is the non notable content. Anyone wishing to re-add this content please use the talk page to justify why you think it is notable.
So what we have left is some very famous musicians, Lincoln and 2 "celebrities" who died of aortic dissection publicly. I think this is notable and this is the standard we should follow, not just adding anyone who has the syndrome. Lesion (talk) 19:42, 25 May 2013 (UTC)
replies: text: As shown by the sections above and the history of the article, it long has had some attributes of a coatrack, which now is under control.  I agree with your changes, except for Schiavelli.  It is undisputed that he had the condition, and was a spokesman for the Marfan Foundation.  He therefore "affected the popular perception of a condition, such as through public awareness campaigns or enduring media coverage".  See WP:MEDMOS#Notable_cases.  I therefore restored him to the article.  Kablammo (talk) 23:39, 28 May 2013 (UTC)
replies: text: I thought this individual was likely to be notable to include, however the source did not support the statement that he contributed significantly to public awareness (can't remember exact previous wording). You have restored the same source, to support the statement that he was actor and spokesperson for the National Marfan Foundation, which no-one can argue with. Would be good to get another source describing their work as part of that foundation too. Lesion (talk) 23:44, 28 May 2013 (UTC)
replies: text: This one may do:  " Mr. Schiavelli raises the public profile of a syndrome most people know little about".  Kablammo (talk) 03:05, 29 May 2013 (UTC)
thread_title:  Notable society and culture section or trivia list? 

message: * We link to Antoine Marfan a few times in the article already, notably a few lines down fro this hatnote in the lead. 
* Mafan in Iran has a population of 43. How notable is this for a hatnote on this page, especially considering the linked page is not spelt "Marfan" but "Mafan"?
I'm going to remove the entire hatnote, not just the recent addition as I don't think it can be justified as being needed. Lesion (talk) 22:13, 28 May 2013 (UTC)
replies: text: Agreed.  Neither is needed.  Kablammo (talk) 23:32, 28 May 2013 (UTC)
thread_title:  Hatnote - really necessary? 

message: A new simpler corrective operation has recently been developed, following a proposal from a sufferer, Tal Golesworthy, who was concerned at the prospect of the constraints (especially the risks from the required blood-thinning medication) following the traditional tissue replacement operation.  An engineer with no medical background, he suggested that a sleeve of medical-grade mesh wrapped around the aorta would prevent the potentially fatal inelastic stretching.  After four years of medical testing and preparation, he himself became the first patient of the new approach.  Since then more than 40 people with similar conditions have benefitted.The engineer who fixed his own heart and others too, BBC News,  Smitha Mundasad, 20 November 2013
Whilst BBC is generally reliable, it is not really a suitable medical source, per WP:MEDRS. Having said that this is potentially worthy of inclusion in the article, potentially in a "research" section since it sounds like it is still fairly new and not widely used. Lesion (talk) 22:15, 20 November 2013 (UTC)
thread_title:  Surgical mesh 

message: Are the Ghent Criteria the most widely use world wide? Should they be moved to the first section of the diagnosis section in that case?
Also, I think it is unnecessary to repeat things again in that 3 column list that have already appeared in the Ghent criteria. 188.29.83.183 (talk) 14:50, 28 June 2014 (UTC)
thread_title:  Diagnosis section 

message: Howdy! I'm a marf myself and am a member of several sites/forums/etc dealing with the topic.  One thing that comes up often is "Did XXXX have Marfan Syndrome?", where XXXX is a celebrity.  I'm compiling a list of suspected celebs, and listing as "Confirmed", "Debunked", "Rumored" with source links for verification.  Would this be a welcome addition on this page or possibly another page? I know there's pages for "Notable German Americans" (https://en.wikipedia.org/wiki/List_of_German_Americans), so precedence does exist.
Trollboy665 (talk) 23:09, 15 January 2015 (UTC)
replies: text: A separate List of notable people who had the condition, or category, may be the best way to handle them.  Kablammo (talk) 18:02, 9 December 2016 (UTC)
thread_title:  Celebrities 

message: As mentioned above and in the archives, this article is not the place for a list of folks with Marfans.  See the relevant section of the Manual of Style for medical subject matter.  Kablammo (talk) 18:19, 9 December 2016 (UTC)
thread_title: People who have/had Marfans

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*Added archive https://web.archive.org/web/20081015174003/http://www.hopkinsmedicine.org/CardiacSurgery/marfancenter/history.html to http://www.hopkinsmedicine.org/CardiacSurgery/marfancenter/history.html
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thread_title:  External links modified 

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thread_title:  External links modified 

message: Per WP:MEDMOS we generally don't have sections like this as they just become BLP violations/gossip mongering like this and as the edit comments visible in the wikitext below try to warn against.   We do discuss notable cases if they contributed in some significant way to the history of disease. 
;Society and culture
Contributors to public perception of Marfan syndrome include:
* Studies suggest that Akhenaten, a pharaoh of the Eighteenth Dynasty of Egypt, may have had Marfan's syndrome.
* Isaiah Austin, a basketball player who was diagnosed with it, and forced to postpone his dream of an NBA career.
* Bradford Cox, frontman of the band Deerhunter.
* Austin Carlile, former frontman of the band Of Mice and Men.
* Flo Hyman, an Olympic silver medalist in women's volleyball (1984) who died suddenly at a match from an aortic dissection.
* Jonathan Larson, author and composer of Rent, who also died from aortic dissection the day before the opening of the musical. 
* Abraham Lincoln was once thought to have had the disease, but that view has been contested, and considered to be unlikely by modern geneticists. Conclusive confirmation through DNA testing is not possible, as access to Lincoln's DNA was denied.
* Peter Mayhew, the actor who played Chewbacca in the Star Wars franchise, has been diagnosed with Marfan syndrome and owes his height to it.
* Vincent Schiavelli, an actor, food writer and spokesperson for The Marfan Foundation (then named the National Marfan Foundation), who had the syndrome, but died from an unrelated cause. 
* Sir John Tavener, English composer.
* Javier Botet, a Spanish actor notable for his roles in Mama and It (2017) has been diagnosed with Marfan syndrome, making use of it to portray characters that could be considered unnerving.
 
-- Jytdog (talk) 00:12, 5 January 2018 (UTC)
replies: text: Agreed.  A category should be sufficient.  Kablammo (talk) 00:27, 5 January 2018 (UTC)
thread_title:  "cases" 

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thread_title:  External links modified 

message: , could you look at the recent addition to the last paragraph of the Surgery section?  
Some years ago I removed this addition as it did not seem to me to be a reliable source.  While the first sentence of the paragraph addition is better sourced, that source is not a review article (although the procedure appears promising).  
Best wishes, Kablammo (talk) 16:54, 31 July 2018 (UTC)
replies: text: Have adjusted it based on the source. Your thoughts? Doc James (talk · contribs · email) 19:14, 31 July 2018 (UTC)
replies: text: It looks good.  I've been unclear on whether and how we report new developments which are not yet discussed in reviews. It looks like we can mention them without making qualitative assertions until they have been the subject of reviews. Kablammo (talk) 13:23, 1 August 2018 (UTC)
thread_title:  Request for review of recent addition 

message: Hey!
As far as I know, Joey Ramone of The Ramones had Marfan’s Syndrome.
Perhaps he could be added to the famous people section.
Cheers,
LC 2A10:8001:CCF6:0:48A9:9730:EF4E:1EFD (talk) 13:37, 1 December 2022 (UTC)
thread_title:  Joey Ramone