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- 1 Top picture doesn't match caption?
- 2 Is that appropriate?
- 3 This page is plagiarized
- 4 Prader-Willi Syndrome in the media
- 5 Appropoiatness of the Picture in the Intro...
- 6 Photo of PWS patient
- 7 Suffer from
- 8 Society and Culture
- 9 Published Clinical Diagnostic Criteria for PWS - 1993
- 10 Photo (again) - caption and description say the opposite
- 11 Fairness of the name
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 126.96.36.199 (talk) 21:54, 30 September 2010 (UTC) This picture is inappropriate because we haven't respected the privacy of this person. This boy should have his eyes blacked out at least. — Preceding unsigned comment added by 188.8.131.52 (talk) 00:42, 13 May 2012 (UTC)
The first two pictures in this article are the wrong syndrome. They're patients with 22q11.2 deletion syndrome (you can see they have digital watermarks from 'Images in Paediatric Cardiology' and people with PWS don't have a lot of congenital heart disease). The 'tubular' nose and slightly simple ears are features of 22q11 DS. The original images are from: Digilio MC, Marino B, Capolino R, Dallapiccola B. Clinical manifestations of Deletion 22q11.2 syndrome (DiGeorge/Velo-Cardio-Facial syndrome). Images Paediatr Cardiol 2005;23:23-34 http://www.impaedcard.com/issue/issue23/digiliom/digiliom.htm Afry (talk) 00:21, 21 February 2011 (UTC)
Is that appropriate?
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)
- 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)
Yes, PW syndrome does cause massive, excessive consumption of food, and it does literally need to be lock away from them. DocGratis 00:52, 3 June 2007 (UTC)
I heard somewhere that Prader willi victims are always under the idea that there starved near to death because of the lack of messeges from the stomach, —Preceding unsigned comment added by 184.108.40.206 (talk) 14:29, 17 August 2009 (UTC)
my brother had this syndrome and yes, the person with this syndrome does not know never feel the satisfaction of being full up. He/she will always feel the urge to eat. Also why did you bring Americans in this? btw I'm Irish —Preceding unsigned comment added by Paulandmomo1 (talk • contribs) 00:43, 16 August 2010 (UTC)
Individuals with PWS have little or no impulse control when it comes to food. Virtually their entire lives revolve around getting food, having food, thinking about food and eating food. PWS is a genetic and psychiatric disorder. Most individuals who are overweight have control over themselves (whether or not they choose to exercise that control). For people with PWS, the control is, and never will be there. They literally cannot help themselves...they require a great deal of assistance and support. Food cravings and eating can be managed with routine, structure and consistency, but it is a lifelong struggle. — Preceding unsigned comment added by 220.127.116.11 (talk) 03:38, 16 November 2011 (UTC)
This page is plagiarized
How about some kind of symptoms? Bihal 11:29, 17 April 2006 (UTC)
- 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)
Prader-Willi Syndrome in the media
Appropoiatness of the Picture in the Intro...
The caption reads "A 1680 painting by Juan Carreno de Miranda of a girl presumed to have Prader-Willi syndrome." Presumed by who? If we don't have a reputable source making the assumption, we can't make that claim, and the picture needs to be replaced. Seeing as the condition has only been described since 1956, I'm finding this unlikely. I added the tags, please try to address this in a timely manner. 18.104.22.168 (talk) 16:30, 6 September 2009 (UTC)
- Jawohl Kapitan 22.214.171.124! Try Google, the 3rd hit on page 6 of The Poetry of Genetics: On the Pitfalls of Popularizing Science. Feel free to sort the references out yourself.
Photo of PWS patient
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? 126.96.36.199 (talk) 13:48, 8 February 2010 (UTC)
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.
Society and Culture
"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)
- 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. 188.8.131.52 (talk) 17:13, 28 November 2011 (UTC)
Published Clinical Diagnostic Criteria for PWS - 1993
The purpose of scoring is to refer the subject for Genetic Testing.
To score, major criteria are weighted at 1 point each, and minor criteria are weighted at 1⁄2 point each. Supportive findings increase the certainty of diagnosis but are not scored. For children 3 years of age or younger, 5 points are required, 4 of which should come from the major group. For children 3 years of age and for adults, a total score of 8 is required and major criteria must comprise 5 or more points of the total score.
TABLE 1. Published Diagnostic Criteria for PWS Major Criteria 1. Neonatal and infantile central hypotonia with poor suck, gradually improving with age 2. Feeding problems in infancy with need for special feeding techniques and poor weight gain/failure to thrive 3. Excessive or rapid weight gain on weight-for-length chart (excessive is defined as crossing two centile channels) after 12 months but before 6 years of age; central obesity in the absence of intervention 4. Characteristic facial features with dolichocephaly in infancy, narrow face or bifrontal diameter, almond-shaped eyes, small- appearing mouth with thin upper lip, down-turned corners of the mouth (3 or more are required). 5. Hypogonadism — with any of the following, depending on age: a. Genital hypoplasia, (male: scrotal hypoplasia, cryptorchidism, small penis and/or testes for age ( 5th percentile); female: absence or severe hypoplasia or labia minora and/or clitoris b. Delayed or incomplete gonadal maturation with delayed pubertal signs in the absence of intervention after 16 years of age (male: small gonads, decreased facial and body hair, lack of voice change; female: amenorrhea/oligomenorrhea after age 16) 6. Global developmental delay in a child 6 years of age; mild to moderate mental retardation or learning problems in older children 7. Hyperphagia/food foraging/obsession with food 8. Deletion 15q11 – 13 on high resolution ( 650 bands) or other cytogenetic molecular abnormality of the Prader-Willi chromosome region, including maternal disomy Minor Criteria 1. Decreased fetal movement or infantile lethargy or weak cry in infancy, improving with age 2. Characteristic behavior problems – temper tantrums, violent outbursts, and obsessive-compulsive behavior; tendency to be argumentative, oppositional, rigid, manipulative possessive, and stubborn; perseverating, stealing, and lying (5 or more of these symptoms required) 3. Sleep disturbance and sleep apnea 4. Short stature for genetic background by age 15 (in the absence of growth hormone intervention) 5. Hypopigmentation — fair skin and hair compared with family 6. Small hands ( 25th percentile) and/or feet ( 10th percentile) for height age. 7. Narrow hands with straight ulnar borders 8. Eye abnormalities (esotropia, myopia) 9. Thick viscous saliva with crusting at corners of the mouth 10. Speech articulation defects 11. Skin-picking Supportive Findings 1. High pain threshold 2. Decreased vomiting 3. Temperature instability in infancy or altered temperature sensitivity in older children and adults 4. Scoliosis and/or kyphosis 5. Early adrenarche 6. Osteoporosis 7. Unusual skill with jigsaw puzzles 8. Normal neuromuscular studies
The article concludes: When definitive diagnostic testing is not available, as was the case for PWS when the 1993 criteria were developed, diagnostic criteria are important to avoid overdiagnosis and to ensure that diagnostic test development is performed on appropriate samples.
When diagnostic testing is available, as is now the case for PWS, diagnostic criteria should serve to raise diagnostic suspicion, ensure that all appropriate people are tested, and avoid the expense of testing unnecessarily. Results indicate that the sensitivities of most of the published criteria are acceptable. However, 16.7% of patients with molecular diagnosis did not meet the 1993 clinical diagnostic criteria retrospectively, suggesting that the published criteria may be too exclusive.
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? 184.108.40.206 (talk) 17:40, 30 October 2013 (UTC)
- 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. 220.127.116.11 (talk) 17:46, 30 October 2013 (UTC)
Fairness of the name
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? 18.104.22.168 (talk) 09:43, 8 October 2014 (UTC)