Talk:Hidradenitis suppurativa
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To do:
- Put in more about stress triggers
- social/psychological impact
--zandperl 19:04, 5 Apr 2004 (UTC)
===Hello. Hopefully I am doing this correctly. If not please accept my sincere apology. I wanted to drop you a note to let you know that I have been working on figuring out the name for Hidradenitis Suppurativa in other languages. If you are interested you may want to check out my HS page at http://www.frontiernet.net/~ruthb/HidradenitisSuppurativa.html . I have added a few things under my "Synonyms" category that you may find interesting. I have also added an International Sites category. ( I have figured out HS for Finnish, Russian, Italian, Chinese, and am working on Japanese) I realize my page is a mess. I also realize that some of the ways that I am linking to searches are not proper or possibly illegal. But at this point I don't have the proper language tools to be able to post the actual foreign names of HS in other languages. So in order to get this info out there and to reach others with HS in other countries I am taking the risk. If you are able to post the names of HS in other languages I would be forever grateful. This is one of our major obstacles with HS; finding others in foreign countries. But it has become a "special" project for me. :-) Thanks much for all you do here at Wikipedia. And again, sorry if I am posting incorrectly. I just don't have the time to learn how to edit a WIKI. So if you choose to delete my message here, I will completely understand! lol Sincerely... Ruth B ~~ ruthb@frontiernet.net ~~
- Thanks for adding the information! I'm not sure if it's appropriate to put the links to non-English webpages on the English version of the page. I've created a rough French version of the page and the links can certainly go there. --zandperl 00:24, 14 November 2005 (UTC)
==Zandperl, Thanks for all the hard work! And putting up with us "newbies" that may not know how to edit a WIKI correctly. Just wanted to let you know that Adelino and I are working on creating a Portuguese version. http://pt.wikipedia.org/wiki/Hidrosadenite Hopefully what we are doing is acceptable. :-) Thanks Rob! I totally agree with number 7 ;-) What's in a name? Eh? I also wanted to add that I realize I have the "Velpeau's Disease" reference on my website also. I believe this is a good example of possible incorrect information being posted and copied from one website to another... I have also noticed that the "snake oil salemen" and spammers have taken a liking to this phrase and are using it strongly. I will correct this on my website as soon as I get around to doing all my updates, and after checking a bit further in medical references for the term "Velpeau's disease". But since the HSF does have the best medical database on HS, I'm almost certain that you are correct. Although this brings up another point for the ongoing discussion/debate of "HS versus AI"...or What is the actual correct name for this disease...different countries prefer different names... And once again, hopefully this is ok to be discussing this here...? If not, Zandperl please let us know and we'll take it to private email. Thanks --RuthB
== I propose the following:
1. Under the category of "Causes". That "bacterial infection" be removed. And that "Tabalie's" comments of "HS is not caused by any bacterial infection -- any infection is secondary. Most cultures done on HS lesions come back negative for bacteria, so antibiotics should be used only when a bacterial infection has been confirmed by a physician." Be moved to the section of "Treatments", Next to "Oral Antibiotics". Since bacteria has not been proven to be a *cause* of HS. It *IS* only a secondary infection when it is detected.
2. Under the category of "Severe Complications" the following statement (or something similar) is added: "HS abscesses can develop Cellulitis, Sepsis or Septicemia. Which in severe cases can cause death."
3. Under the category of "External links" the French links should be removed. Since they are included on the French Version. Which has a link on the left side of the page.
(I have made similar changes on the Portuguese version.)
4. That we contact our Deutsch/German "HSers" and ask if any of them are willing or have the time to expand the Deutsch version. And this also applies to any other languages that we have HSers available. Since most of us that own HS sites do not have the financial resources to purchase software that will translate our websites. In my opinion, the WIKIPEDIA site is a good opportunity to get information regarding HS into various languages in one place.
5. Suggest that information regarding "Acne Triad/Acne Tetrad" is added. I am not sure if the information regarding this should be put on this page...? Or if it is better to create a separate document for "Acne Triad/Acne Tetrad" and then a link is provided from the HS document...??? Since this is what Adelino has, we will be working to create this information in Portuguese. But I am still unsure on exactly the best way to present this information...? I'm still learning on how to be a good wikipedian. :-) RuthB 22:32, 25 March 2006 (UTC)
(Regarding Bacteria) Ok, actually I tend to agree that there is bacteria present. And I have often presented that opinion in the support groups. But was often told that I was wrong. So this time I thought I would try to take a different approach just to try to get people to discuss it. Probably wasn't the brightest way to go about it. lol I've been very busy lately, but when I get more time I will try to help in finding some citations. I have also been working on finding more people to help in translating the article into other languages. Hopefully soon we will see more people getting involved here. RuthB 16:13, 3 April 2006 (UTC)
[edit] Suggestion for photos
I think it would be very helpful if someone could post photos of the lesions and scarring caused by hidradenitis suppurativa. I realize this may pose difficulties, but perhaps someone associated with the Hidradenitis Suppurativa Foundation could help out? BellyOption 23:59, 10 September 2006 (UTC)
[edit] Citations Needed
One thing I'd like to point out following the above discussion, is to remind everyone that Wikipedia is not supposed to be original research or personal opinions. It is supposed to be reporting a summation of what other researchers say. For example, I believe I got the original list of names from http://hs-usa.org , rather than what I've heard doctors tell me it's called, and as such I should've put in a reference to that webpage.
To further the attempt to make sure we're doing neutral reporting (it's so tempting to put in all my opinions and thoughts on it!) I'm going to stick in a few notes where we need specific citations and references.
--zandperl 13:39, 28 March 2006 (UTC)
- For citation formats, see Wikipedia:Citing sources#How_to_cite_sources or Wikipedia:Footnotes for formats - I used the "Embedded html" described in the former, but I'd eventually love to see the latter. --zandperl 13:48, 28 March 2006 (UTC)
[edit] Addressing psychological effects
(if it has not been already) : It's estimated (due the number of those afflicted who do not consult a physician) that roughly 80% of those with HS suffer from some sort of depression. I added some information to the page a few weeks ago and plan to contribute more. I have done extensive research on the subject, so I would like to (eventually) add what documentation I have found during the past two years about this disease. I myself have HS, and promise to keep personal opinions/theories to myself :)
This acne treatment site probably isn't good for wikipedia.
- —The preceding unsigned comment was added by 24.21.134.225 (talk • contribs). 04:17, 29 November 2006
- So why did you add it ? - I've removed the invalid broken link David Ruben Talk 04:20, 29 November 2006 (UTC)
Sorry, I meant to phrase it as a question, and I hit save page instead of show preview (I think show preview should be the bolded one). The link needed a ~. I'm new to the wikipedia.
