Talk:Pseudoxanthoma elasticum

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I hold the copyright to this document. I am the author of the document. I am also the founder and chief officer of PXE International.

By editing text in wikipedia you agree to license all contributions under the GFDL as explained on the edit screen. See Wikipedia:Ownership of articles and WP:GFDL If you have any questions feel free to ask them on my talk page. - cohesion★talk 05:42, 26 February 2006 (UTC)

This means anyone can edit your article at any time. You should probably keep an eye on it to defend from vandalism. Hope the edit I just made is acceptable. --Pansophia 07:49, 27 February 2006 (UTC)

Sfterry - if you return, please let me know the reference for minimizing cardio and gastrio symptoms as "rare". Has some recent study shifted medical consensus on this?

yes, a huge study that is in press. I will reference it as soon as it is published. I am not sure why someone is adding incorrect and inaccurate information - there is no hang-dog condition associated with PXE - I have physically examined 600 of the known 3000 individuals with this condition - none have the condition you describe. In addition, it is well known that angioid streaks do not cause vision loss. Again, after examining 600 individuals and the angiograms of another 300, we are certain of this fact.

Hi, shouldn't it read "discovered" rather than "invented the gene" bearing in mind you can't invent something that already exists? Also do you think it would be worthwhile mentioning it's association with mitral valve prolapse - thats a sincere question; I'm not an expert. Cheers 165.118.1.50 06:50, 20 June 2007 (UTC) Luke

I would prefer discovered, but the technical term in both science and law is invented. In our study about to be published of 600 individuals with PXE, the MVP rate was lower than the general public. The 'association' was determined by a few case studies about 30 years ago and has no evidence base. Sfterry

Need for improvement

I have identified PMID 15970621 and PMID 15894595 as useful recent clinical reviews of PXE. The article could be greatly expanded with these recent papers. JFW | T@lk 22:17, 18 July 2007 (UTC)

Uh oh

ABCC6 Heterozygotes can still get ocular and cardiac complications: http://archderm.ama-assn.org/cgi/content/full/144/3/301 JFW | T@lk 20:23, 26 March 2008 (UTC)

Treatment of PXE

There are new clinical trials showing good results, and hopefully these new treatments should be added since new treatment methodology is finding its way into types of genetic disorders like PXE.

Chmyr (talk) 20:12, 14 August 2008 (UTC)

Unless the trials have been completed and the results reported, how can this information be verifiable? JFW | T@lk 20:24, 14 August 2008 (UTC)

Do more research on clinicla trials and conference results, and update this arcle. Chmyr (talk) 19:36, 29 August 2008 (UTC)

The onus is on you to demonstrate that these new treatments have been published in peer-reviewed journals and supported by secondary sources. Just ramming boxes onto the article page is not a reasonable alternative. Please try to be reasonable. I have spent quite a lot of time on this article, and am quite happy to include novel approaches provided they have been sufficiently tested. Let me know when the results have been published, and I'm sure we can reach an agreement. JFW | T@lk 23:09, 30 August 2008 (UTC)

I spend about 100 hours a week working on PXE, for the past 13 years, including many peer reviewed papers. I am PI or co-PI on 15 research projects on PXE. Some of what is written under treatment is grossly wrong - PXE has no relation to diabetic retinopathy. It is inappropriate to write unsubstantiated information about diseases - I will just have to hope that people visit PXE International as the authoritative source and do not depend on Wikipedia. I gave up long ago trying to correct this entry. There are many inaccurate statements in it. I wish I had never created this article. Sharon F. Terry, founding Executive Director, PXE InternationalSfterry (talk) 02:38, 5 September 2008 (UTC)

I have contacted you previously to ensure that the article contained the correct information. It is a bit odd that you are now blasting parts of it as "grossly wrong". You are correct that PXE is unrelated to diabetes; the only thing it says about this is that the treatments are similar. That is not "grossly wrong".

"It is inappropriate to write unsubstantiated information about diseases" - I agree and that is the reason that after my work on the article every statement was followed by a reference. If I have made an error interpreting the source, please clarify. If you disagree with the source, please show which other sources take an alternative perspective.

If you had never created the article, someone else would have. I urge you to take the opportunity to provide correct information. But please adhere to Wikipedia policy while doinig so. JFW | T@lk 05:33, 7 September 2008 (UTC)

Article categorization

This article was categorized based on scheme outlined at WP:DERM. kilbad (talk) 05:36, 20 December 2008 (UTC)

The National Association for Pseudoxanthoma Elasticum

An editor is trying to add information about this group, which has an amateuristic website at http://pxenape.org/ (content not updated since 2013). It has been removed a number of times because it does not seem to be an active organisation but I am happy to be persuaded to the contrary (with evidence of course). JFW | T@lk 15:31, 9 August 2020 (UTC)