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)

on your post

1) yes I agree this is out of date and needs to be corrected

2) yes indeed I do worry about the reference Short, et al., 2005 this section is, in my opinion slightly alarmist, by no means do I want to underplay the seriousness of the condition but Short, et al., 2005 suggests that lumps may become common place and cancerous lumps are, consequently less likely to be diagnosed, as I recall, we need to revise this section responsibly to both outline the seriousness of it but at the same time to do so in a balanced and responsible manner

3) 4) N/A

5) yes this does need updating what about recent infromation such as Sellheyer and Krahl (2005) "'Hidradenitis suppurativa' is acne inversa! An appeal to (finally) abandon a misnomer" International Journal of Dermatology 2005, 44, 535-540"

Finally I notice all the comments on this page are 2006 is anyone still active on this topic???? --DeepVeinInsomnia 22:18, 11 March 2007 (UTC)

Contents 1 Suggestion for photos 2 Citations Needed 3 Addressing psychological effects 4 Treatments 5 Overview 6 contagious 7 I would like to help other suffers 8 Refrence? 9 Remove the entire top half of this page

[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)

There are plenty of photos the problem is getting one that comforms to copyright, the best ones are only in journals, and indeed at what stage? How would fellow wikipedians feel about some of the more graphic images in the later stages? --DeepVeinInsomnia 23:00, 11 March 2007 (UTC)

I have aquired a photo (2nd stage HS) where the authour has granted permession for its use on this site would anyone volunter to upload it, and take it through the rights process? as I have not done this before (leave a message on my user page) --DeepVeinInsomnia 22:18, 27 March 2007 (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 :)

—Preceding unsigned comment added by JayEmGee (talk • contribs) 09:07, 31 October 2006

This acne treatment site probably isn't good for wikipedia.

—Preceding unsigned comment 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.

perchance http://abscesses.org/hidradenitisSuppurativa/content/view/31/30/ as an informal CC licensed referenced article, personally for those with access to medical repositories you couldn't do better than Seton, M,. (2006) "teach me, and I will be Silent; Make Me Understand How I have Erred" Job (6:24) American College of Physicians 21 March 2006, Annals of Internal Medicine, Vol 144, Number 6 --DeepVeinInsomnia 23:19, 11 March 2007 (UTC)

[edit] Treatments

I am concerned about this section and the decisiveness on which it comments on treatments. Nearly a quarter of all suffers state that no treatment helps to relieve their symptoms (see http://abscesses.org/hidradenitisSuppurativa/content/view/22/33/ ). I think we need to add some statistic here (see JM von der Werth, HC Williams (2000), The natural history of hidradenitis suppurativa, Journal of the European Academy of Dermatology and Venereology 14 (5), 389-392. doi:10.1046/j.1468-3083.2000.00087.x ) to add some sense of reality. Talking about this as though it is a treatable and hence conveying it as an ultimately curable illness would be a gross exaggeration. --DeepVeinInsomnia 22:43, 11 March 2007 (UTC)

[edit] Overview

This section conveys the illness as rare however with documented (see Jan von der Werth, (2001) Hidradenitis suppurativa, Dermatology in Practice, Volume 9, Number 3, 2001 ISN: 0262-5504 available from http://www.hs-usa.org/pub/articles/2001_HS_VDW.pdf [Accessed 10 March 2006]) evidence that is contrary it is anything but rare and effects approximated one million suffers world wide with over 30% of the population knowing someone that is effected http://abscesses.org/hidradenitisSuppurativa/content/view/22/33/. It has a similar, though deeply less publicised, prevalence as aids in the 90's (http://www.cdc.gov/mmwr/preview/mmwrhtml/00046531.htm#00002287.htm )do we need to debate this or simply over write it?

ggggg

Jensenbeachcpl 01:12, 16 March 2007 (UTC)

[edit] contagious

I am not a doctor. My knowledge of the human body is limited to anatomy and physiology classes to become an E.M.T.

I believe that I have this. No Doctor, of mine, has ever been able to effectively diagnose or treat my condition. I do present with all of the listed symptoms and have never had any luck in getting rid of these lumps. Occasionally they do get infected and the pain is unbearable, so i feel the need to put my two cents into the conversation. I do not believe that they are not contagious. The following evidence is too much to be a coincidence.

I have been getting these lumps since about the age of 18. I am now 36. My father, 3 uncles and my only sister have them. All of the following people never had them before.

My mother has them.

My wife states that she never had them before and started getting them within our first year of marriage. I also had never seen them on her body.

My brother-in-law now is starting to get them after only two years of marriage.

My three aunts all presented with them, within the first year of marriage.

In the past year, i have had sexual intercourse with two other women and within a month, they both presented with them on the inside of their legs, close to their vaginas.

I do not believe that they are S.T.D.'s, but is it possible that if i had one with light drainage, that i could have passed it on through skin contact.

With so few studies on this disease, how can anyone say that it is not contagious.

I welcome any response to this and any suggested treatments.

Jensenbeachcpl 01:40, 16 March 2007 (UTC)

I think 'so few studies' is an objective and increasingly wrong way to view HS, there have been literally hundreds of studies preformed on HS and the amount of peer reviewed work, I have personally noticed, is starting to see an increase.

There is very strong evidence to suggest a genetic disposition to HS (Werth, Williams, Aeburn (2000) The clinical genetics of hidradenitis suppurativa revisited, British Journal of Dermatology 142, 947 - 953), there is also a need to bare in mind the prevalence of the illness (indeed I have made amendments till the article already in relation to this). What you have pointed out is an observation, certainly it is not supported by the body of peer reviewed literature that is currently out there. Indeed in the vast majority (this being the only case I have heard to the contrary) sexual partners do not have the illness, do read my final paragraph.

I would also illustrate that HS shows no bounds, in it's areas of occurence and the vulva (or the the scrotum or penis itself) is well document amoungst the community (Goldbery, Buchler, Dibbell (1996), Advanced Hidradenitis Suppurativa Presenting with Bilateral Vulvar Masses, Gynecologic Oncology 60, 494-497, Article No 0081)

However with respect to your own condition, and may I also point out wikipedia is not the place to pose questions such as you have, but may I suggest you see a GP and describe what you have here, the method of occurences you are describing are not akin to HS, and I would be concerned you have something else (it is worth noting that Herpes simplex and HS are often comorbid illnesses, http://www.emedicine.com/emerg/topic259.htm. It is important to remember than many medical professionals, wrongly, use HS as an umberella term, leading to improper diagnoise of other conditions, whilst it is possilbe you have HS also, it is also possible you have an addition illness hidden by HS) --DeepVeinInsomnia 13:05, 25 March 2007 (UTC)

[edit] I would like to help other suffers

I've had HS for 30+ years. In the past 28 months, I've had seven surgeries related to HS; two of those were for the Ileostomy that was necessary, since the HS had migrated so close to my anus. I've since had most of the tissue of my vulva removed. Many, many years of extremely painful, chronically oozing abcesses relieved by what I determined to be my only option, multiple surgeries. Both armpits, buttocks, groin and small one under a breast. Skin grafts. I'd like to share my HS experiences in any way that might assist HS sufferers.MissCookie 05:14, 27 March 2007 (UTC)

Wikipedia exists so the community can contribute to the articles, however there is a very human desire to help others in a similar state (which is highly commendable) there are sites out there that try to form a supportive community ( a list exists at http://dmoz.org/Health/Conditions_and_Diseases/Skin_Disorders/Hidradenitis_Suppurativa/ ) could I maybe draw your attention to http://abscesses.org which is accepting personal stories from HS suffers (Authours wanted - http://abscesses.org/hidradenitisSuppurativa/content/view/13/41/ ) --DeepVeinInsomnia 22:15, 27 March 2007 (UTC)

[edit] Refrence?

Is there a source for the statment "...but it is generally considered to be ineffective" under Treatments, regarding isotretinoin? if not, it should be removed. 74.142.41.108 05:11, 7 October 2007 (UTC)

[edit] Remove the entire top half of this page

please comment if you want to retain the top half of this discussion page, it should start with a table of content if no one replies i will delete it, also I will delete the statement about refrence (sic) unless this ip can confirm they are part of the active community and understand the challenges this topic faces —Preceding unsigned comment added by Deepveininsomnia (talk • contribs) 22:42, 6 May 2008 (UTC)