Talk:Prader–Willi syndrome

message: I don't know anything about PWS, but the top image doesn't seem to match the description. The description says "Patient with the syndrome showing characteristic facial appearance, with elongated face, prominent nose, and smooth philtrum", but the face doesn't seem elongated, nor does the philtrum appear smooth.  —Preceding unsigned comment added by 67.101.149.175 (talk) 21:54, 30 September 2010 (UTC)
thread_title: Top picture doesn't match caption?

message: In the treatment portion of the article, it reads:
:Throughout their lives, the subject's food should literally be kept under lock and key, since the largest problem associated with the syndrome is severe obesity.
Food kept under lock and key?  Does Prader-Willi syndrome cause an abnormal desire for unnecessary consumption of food?  If not, is that not statement not offensive?  I'm a skinny guy, but I'd imagine 100 million overweight Americans wouldn't be pleased if they read this.  Baribeau 00:05, 29 March 2007 (UTC)
replies: text: I don't know much about Prader-Willi syndrome, but on the documentary I watched called "Can't Stop Eating," two individuals with PW syndrome were followed with a camera crew. It seemed to me that the individuals family, and caretakers, kept them away from the kitchen as much as possible. Actually, the teenage boy was at a center where the kitchen was literally locked tight to prevent him from getting in. It might not be that far fetched because the appetite seems to be unbearable for those with PW syndrome. As for offending overweight people - I would hope that the 100 million overweight Americans (I being one of them) would understand the situation. a person with PW syndrome has an appetite that is far more extreme than an average overweight persons. PoeticXcontribs 03:01, 30 April 2007 (UTC)
thread_title: Is that appropriate?

message: This page appears to be copied from genetests.org. I'll work on replacing it soon InvictaHOG 01:50, 11 October 2005 (UTC)
replies: text: I just saw a little thing on CNN about this which attributes retardation to the disorder as well. i'll put it in Joeyramoney 00:27, 10 June 2006 (UTC)
thread_title:  This page is plagiarized 

message: How about some references here. The author seems to assume that we know what market "channel 4" services  —Preceding unsigned comment added by Phreed100 (talk • contribs) 18:51, 9 June 2008 (UTC)
thread_title:  Prader-Willi Syndrome in the media 

message: The current picture showing a patient with PWS has the caption: "note the absence of typical PWS features".
If this article is supposed to be informative, how about we try to find a picture of a patient that actually HAS the typical features? 147.8.62.99 (talk) 13:48, 8 February 2010 (UTC)
replies: text: 12 years later, and that's the first thing I noticed about the article.  The picture at the top has the eyes boxed out, so there is no picture showing facial features.  Why not remove both of them if they are not helpful? --2607:FEA8:FF01:4E54:B138:19EB:6403:95EC (talk) 01:19, 2 February 2022 (UTC)
thread_title: Photo of PWS patient

message: It is inappropriate to say that individuals suffer from any disability.  This assumes a variety of things of the individual with the disorder.  People have disorders, they do not "suffer" from them and many individuals would find this terminology offensive.  A disability can be defining and important to the person that has it.
People suffer from diseases, not disabilities.  —Preceding unsigned comment added by 68.104.157.139 (talk) 14:13, 23 September 2010 (UTC)
replies: text: This is political correctness.   I have a mild disability that gives me poor eyesight and makes it impossible for me to drive, in a culture where driving is expected.  I don't find the word "suffer" offensive, nor do I find the disability "defining and important" to me, just frustrating.   2001:558:6011:1:E592:162A:3D0B:1B42 (talk) 00:57, 2 April 2018 (UTC)
thread_title:  Suffer from 

message: "In Judas Strain, a book by James Rollins, victims of an unknown plague suffer from Prader-Willi as a side-effect, gorging themselves on human flesh until their stomachs explode."
Is this sentence relevant or necessary to an encyclopedic article about a congenital medical disorder? Does it augment the general understanding of the disease this article hopes to establish, or is it simply a plug for some fantasy novel? Inoculatedcities (talk) 00:35, 18 October 2011 (UTC)
replies: text: I reworded it.  The disorder is named in the book so I guess the item is as valid as any other 'in popular culture' reference.  I don't think it's a plug, but I think the person who added it may not have read the article carefully.  Saying victims "suffer from Prader-Willi as a side-effect" suggests the person who added it thinks that Prader-Willi syndrome is just another word for 'overating' rather than a disorder which causes overeating, among other things.  Also, viruses don't have 'side effects', they have symptoms.  Drugs and treatments have side effects. 68.33.14.232 (talk) 17:13, 28 November 2011 (UTC)
thread_title: Society and Culture

message: The box with the photo says "Prader-Willi syndrome phenotype at 15 years of age. Note presence of typical PWS facial features and mild truncal obesity", while the image description page has "Note absence of typical PWS facial features and presence of mild truncal obesity". Which is considered correct? 212.225.122.45 (talk) 17:40, 30 October 2013 (UTC)
replies: text: I've changed the description in the box on the page, as the source on PubMed explicitly matches that found on the page description. Even if some of the facial features seem present, I don't think we can reinterpret what the source says. 212.225.122.45 (talk) 17:46, 30 October 2013 (UTC)
thread_title:  Photo (again) - caption and description say the opposite 

message: So Labhart, Ziegler and Fanconi miss out? Shouldn't it be Prader-Willi-Labhart-Ziegler-Fanconi, or PWLZF? Just doesn't seem fair to the other cofounders? 134.148.71.167 (talk) 09:43, 8 October 2014 (UTC)
thread_title:  Fairness of the name 

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thread_title:  External links modified 

message: I noticed that the 400,000 sufferer figure leads to a dead link on the Huffington Post website. I found the original source and it led me to another source, a 2002 paper:
Carrel AL, Myers SE, Whitman BY, Allen DB (April 2002). "Benefits of long-term GH therapy in Prader-Willi syndrome: a 4-year study". J. Clin. Endocrinol. Metab. 87 (4): 1581–5.doi:10.1210/jc.87.4.1581. .
I don't know how to properly modify the text for the sourcing on Wikipedia, so if anyone can do that change, that would be great. --Agamemnus (talk) 22:42, 17 October 2015 (UTC)
thread_title:  Sourcing 

message: The article's current description of the constant ravenous hunger which torments Prader-Willi patients seems understated, dry, and clinical.  I don't wish to sensationalize, but as it stands, I fear that the reader may not get a true picture of how god-awful this syndrome is, for the patients, and for the care-givers, who must relentlessly steel themselves against the patients' unceasing, and often heart-rending, demands for more food.  I am attempting to correct this, and I am mentioning the fact that caregivers need to strictly limit access to food, usually by installing locks on the refrigerator and on all food-storage places.  With a reference, of course.  HandsomeMrToad (talk) 10:12, 16 June 2016 (UTC)
replies: text: Nothing wrong with dry. Doc James (talk · contribs · email) 16:23, 4 September 2016 (UTC)
thread_title: Appetite

message: PWS is not an autosomal dominant disorder and this is a huge miscommunication. PWS is a genetically imprinted syndrome (the first one ever identified if I am not mistaken). Normally healthy adults have expression of both maternal and paternal PWS critical region genes on chromosome 15q11.2-13. About 3/4 of PWS patients have absence of paternally derived genes here, the remainder are due to various rare or yet to be elucidated mechanisms. The maternally inherited genes are silent in all normal people, with loss of the paternal genes due to imprinting PWS ensues. It is misleading to call this an autosomal dominant disorder, if that terminology is used it should be explained in further detail. It is generally believed that the imprinting is caused by methylation of the allele, not an autosomal dominant phenomenon.
Source: $500k medical education, Robbins & Cotran 9e.
::Thanks. We have another good ref  Doc James (talk · contribs · email) 02:01, 10 April 2017 (UTC)
thread_title:  PWS is not autosomal dominant, it is a genetically imprinted syndrome 

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thread_title:  External links modified 

message: PWS is not inherited but instead the genetic changes happen during the formation of the egg, sperm, or in early development.[3] There has not been any risk factors due to this inheritance.[7] Those who have one child with PWS have less than a 1% chance of the next child being affected.[7]
syndrome (PWS) is a genetic disorder caused by the loss of function of specific genes.[3] In newborns symptoms include weak muscles, poor feeding, and slow development.Martinafarag (talk) 14:59, 3 October 2018 (UTC)
replies: text: Do you have a particular point to make here, or do you have a question? Thanks. Martinevans123 (talk) 22:41, 16 November 2018 (UTC)
thread_title:  Prader- Willi syndrome  

message: there are many Patients with Prader-Willi practicing (modified) ketogenic-diets,
who report improved quality of life, improved cognition and reduced appetite.
mostly this is reported via blogs and social networks (I was explained that such links don't fit wikipedia)
there exists an 1970 study, which summarizes that ketogenic diet for Prader-Willi results with decreased appetite
  - here : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4955809/
there exists an 2017 study, which summarizes that modified ketogenic diet for Prader-Willi results with many areas of improved life quality
  - here : https://www.pws.org.nz/wp-content/uploads/2018/06/TREND-Community-Diet-Initiative-Overview.pdf
is there a way to incorporate this information in the prader-willi page ? 
MulaLiron (talk) 14:37, 14 December 2018 (UTC)
thread_title:  Ketogenic diets for Prader-Willi 

message: Someone in my class has it and we yeah bye :)  — Preceding unsigned comment added by 47.154.8.115 (talk) 02:54, 30 May 2019 (UTC)
thread_title:  praders willi  

message: The wiki article about a genetically similar but functionally different syndrome, Angleman syndrome indicates that life expectancy for that condition is normal; could someone find/add that info for this condition to this article? UnderEducatedGeezer (talk) 12:46, 16 September 2019 (UTC)
thread_title:  Life expectancy? 

message: The current title uses an en dash between Prader and Willi. The article was originally created with a hyphen, but was moved with WP:MOS as the justification. But the relevant section of the MOS states: "Generally, use a hyphen in compounded proper names of single entities", and gives the example of Wilkes-Barre, PA, which is named after two people. That's the same situation as here. (The en dash serves to show a separation between the two, as opposed to the hyphen linking them.) As such, I believe this article should be moved back to the hyphenated version, Prader-Willi syndrome. Thoughts? — tooki (talk) 01:01, 26 November 2019 (UTC)
replies: text: Yes. There seem to be quite a few listed under :Category:Rare syndromes which are similarly two-name origin and use a hyphen? Martinevans123 (talk) 11:08, 26 November 2019 (UTC)
thread_title:  Title formatting 

message: There is treatment for the condition, but the narrator in Mystery Diagnosis says there is isn't.  — Preceding unsigned comment added by 2601:18D:4700:2D30:8DF5:587:8E9F:B861 (talk) 21:02, 25 December 2021 (UTC)
thread_title:  Treatment 

message: Reading through the article, there doesn't seem to be any mention as to whether or not P-WS has any effect on one's life expectancy.
In a local newspaper I noticed a woman with this condition died at age 34. I don't know if this is typical or not?
StuZealand (talk) 11:50, 15 July 2023 (UTC)
thread_title:  Life expectancy?