Talk:Hidradenitis suppurativa

To do
--zandperl 19:04, 5 Apr 2004 (UTC)
 * Put in more about stress triggers
 * social/psychological impact
 * 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)

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)

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 Citing sources or 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)

Q about citation I just added
The ref to "tunnels" said citation needed, and I found an article confirming that, though not the exact same wording. I felt it was useful to confirm that "tunnels" exist, so put in the citation.

Is this OK? WardXmodem (talk) 22:21, 7 December 2013 (UTC)

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)

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)

I have found that washing my armpits, then putting alcohol on them, then, when dry, put Gold Bond Powder, and doing this at least one time daily helps them go away and helps prevent new ones from forming. Cindi H — Preceding unsigned comment added by 173.216.87.110 (talk) 14:39, 29 March 2012 (UTC)

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)

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)

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)

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)

British Association for Hidradenitis Suppurativa
Please would you consider adding the website address for the British Association for Hidradenitis Suppurativa to the HS related pages. WWW.BA-HS.ORG.UK 90.197.86.28 (talk) 14:31, 23 June 2009 (UTC)

is there and studie's open right now
i have had hs for 5 yrs and never heard of 1 study for it can anyone help or knows where i can go to find studie's on hs

75.70.139.70 (talk) 04:44, 7 August 2009 (UTC)

Hi
My daughter has this condition and I have looked at this article a few times after my husband found it. Thankyou for it. I would like to add some material, at some point, as we have had some very real success treating it.. I will never put any material in without consensus. Bianca

--LoudBellRinger (talk) 02:13, 11 September 2009 (UTC)

Just checked the Tumeric article and it shows no information related to treatement of HS with Tumeric or Curcumin so I removed the link

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NEJM article by Jemec
This is probably the classic article, and this entry could be rewritten to follow this article. http://www.nejm.org/doi/full/10.1056/NEJMcp1014163 Clinical Practice: Hidradenitis Suppurativa Gregor B.E. Jemec N Engl J Med 366:158-164 January 12, 2012 DOI: 10.1056/NEJMcp1014163 Key Clinical Points Hidradenitis Suppurativa There's also a more recent article on two successful phase 3 trials of adalimumab, which also has a nice introductory summary. http://www.nejm.org/doi/full/10.1056/NEJMoa1504370 But it isn't a review article. --Nbauman (talk) 05:26, 4 August 2016 (UTC)
 * Hidradenitis suppurativa is a chronic, recurrent inflammatory disease affecting skin that bears apocrine glands.
 * It is manifested as painful, deep-seated, inflamed lesions, including nodules, sinus tracts, and abscesses, and is estimated to affect 1% of the population.
 * A long delay in diagnosis is common, since the disease is often mistaken for a simple infection.
 * Lesions treated with incision and drainage routinely recur.
 * Few randomized trials have been carried out to guide care, but observational data suggest that many patients have improvement after treatment with antibiotics; a tetracycline or a combination of clindamycin and rifampin is often used.
 * For more severe disease, treatment may involve immunosuppressive agents such as inhibitors of tumor necrosis factor α, although results of randomized trials have been inconsistent.
 * For recalcitrant lesions, complete removal by surgical excision or laser therapy often results in local clearing.

Cigarette smoking as a triggering factor of hidradenitis suppurativa
I added this but someone else deleted it, so I'm putting it here on the talk page to see what others think.

https://www.ncbi.nlm.nih.gov/pubmed/10393449

Dermatology. 1999;198(3):261-4.

Cigarette smoking as a triggering factor of hidradenitis suppurativa.

König A1, Lehmann C, Rompel R, Happle R.

Out of 84 patients treated for hidradenitis suppurativa, 63 subjects (27 men, 36 women) completed the questionnaire. The rate of active cigarette smokers was 88.9% (56 patients), whereas 4 subjects (6.4%) had never smoked. 3 patients (4.8%) stated to be ex-smokers, but 2 of these had quit smoking only recently and after onset of the disease. The rate of smokers in the matched-pair control group was 46%. The significantly higher proportion of active smokers among patients with hidradenitis suppurativa can be expressed by an odds ratio of 9.4, the calculated 95% confidence interval was 3.7-23.7 (p < 0.001). The expected smoking prevalence in Germany was 26.7% according to national statistics. 73% of our patients had no family history of hidradenitis suppurativa whereas 27% reported at least one affected first-degree relative.

Bk33725681 (talk) 07:46, 1 January 2017 (UTC)
 * Well, the first problem I see is that this is a rather old study (almost twenty years old). Is there anything more recent on the relationship between cigarette smoking and hidradenitis? Another problem is that this is a primary source rather than a secondary source (which is strongly preferred per WP:MEDRS). TylerDurden8823 (talk) 08:54, 1 January 2017 (UTC)

Hi, there are now multiple primary, secondary and tertiary sources regarding the issue of smoking and HS. I would rather not see this wikipedia article descend into philosophical challenges which may lack scientific evidence. Smoking bad. I smoke. I have HS. The following is a quote from a dermatology professor (primary source) about a decade ago, which still rings true for me on a personal, subjective level "But I can only agree that this story is indeed a ‘textbook case’; but not of ‘the close relationship between smoking and HS’, of which there isn’t a whiff of evidence – but of the increasingly common misapplication of associative epidemiological statistics to aetiology. Causal mechanics is something it cannot do, and the frequent, inappropriate attempts serve only to produce the daily horror stories and lists of unsubstantiated associations that clog our journals and newspapers. Use of this bastard epidemiological substitute for science has spread like a cancer; it is doing much damage to genuine research, and has done much harm to the public’s belief in medical science." https://drive.google.com/open?id=0B8dMkA-G-zIhRzlyUGhaZm95WlU Shuster, S. (2008), A lesson to be learned from Karl Marx: smoking triggers hidradenitis suppurativa: reply from author. British Journal of Dermatology, 159: 256–257. doi:10.1111/j.1365-2133.2008.08605.x OzRobHowes (talk) 22:16, 25 October 2017 (UTC)

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Wiki Musings Continued from a Decade Ago
--OzRobHowes (talk) 22:43, 25 October 2017 (UTC) --OzRobHowes (talk) 22:43, 25 October 2017 (UTC)
 * 1) 1 1. I cannot recall a medical peer-reviewed publication that referred to HS as 'velpeau' disease. That does not mean it does not exist. Previously discussed here a decade ago, therefore I will go ahead and remove the reference and see what happens.

--OzRobHowes (talk) 22:57, 25 October 2017 (UTC)
 * 1) 2. The citation to a cite called abscesses dot org refers to a lay site which was not even specific for HS, and the statement that one quarter of HS people do not respond to treatment cannot be verified or supported. This is really an oversimplification. Until 2015 there was no treatment reccomended by the FDA, United States. ( Another way to say this is that there was poor evidence for ANY medical treatment, whether Wikipedia can find a citation or not). Prior to that, all treatments prescribed have been off label. In other words the list of drugs used to treat HS is endless, the list extends to infinity. I have had HS for 20 years. I have not found a medication that treats HS. This is the common experience. No offense but I also think the abscesses dot org website was what we would now call a "PARODY" website. Wikipedians beware. Removing a minority view complies with Wikipedia editing Guidelines perhaps: https://en.wikipedia.org/wiki/Wikipedia:No_original_research#Neutral_point_of_view


 * User:OzRobHowes Here is a ref for the first and removed the other.  Doc James  (talk · contribs · email) 01:52, 26 October 2017 (UTC)

OzRobHowes (talk) 06:38, 27 October 2017 (UTC) Thats cool, I will have suck it up for #1 Dr Lee trumps my subjective opinion. Thank you! OzRobHowes (talk) 06:38, 27 October 2017 (UTC)

JAMA review
10.1001/jama.2017.16691 JFW &#124; T@lk  14:25, 29 November 2017 (UTC)

Karl Marx
Should this material be re-added? I'm aware that appears to be a single primary source. Thanks. Martinevans123 (talk) 15:16, 2 July 2018 (UTC)

Contradiction in article
In the lede: The condition is not caused by an infection, poor hygiene, or the use of deodorant.[3][4] Under the heading triggering factors: Deodorants, depilation products, shaving of the affected area – their association with HS is still an ongoing debate amongst researchers.[19]

Is there no association between deodorants and HS, or is the association between deodorants and HS disputed? The article can only make one of these claims in good sense.--66.190.13.201 (talk) 10:25, 1 October 2021 (UTC)

Direct causes
I worked on creating the original Wikipedia page on Hydradenitis Suppurativa 15-20 years ago (under some user name I no longer recall). I suffered tremendously from the condition for over 10 years before finally being correctly diagnosed. I have experienced *hundreds* of outbreaks and long-lasting episodes over a *40 year period* and after dissecting my own experience and studying everything I could regarding apocrine glands and hydradenitis suppurativa, it is *crystal clear* to me that, at least in my own case, stress, fear, pain, and sexual arousal or erotic stress are unquestionably THE MAIN TRIGGERS.

Following is my most recent addition to the page. I fully expect it to be deleted (again) because I don't have some kind of degree in the field and the requisite cites. However, I am absolutely certain that my 40 years of continual personal experience, diligent observation, and simple deductive reasoning are of great value here!!

""Stress, Pain, Sexual Arousal, Fear. Apocrine glands secrete a concentrated fatty sweat, and are stimulated by situations causing stress, pain, sexual arousal or fear. Such situations cause the apocrine glands to contract, expelling their contents. If the glands or hair follicles associated with the apocrine glands are somehow blocked, this can cause abscesses. It is unknown why these direct causes have been continually overlooked.""

Is this really just *so simple* as to be disregarded??

-What are the purpose and function of apocrine sweat glands? -What situations stimulate secretion of the fluids created by these glands?

WILL SOMEONE IN THE MEDICAL COMMUNITY **PLEASE** TAKE ON THE RESPONSIBILITY OF ADDRESSING THIS!!! Don't let people continue to suffer this horrendous condition due to its psychological triggers continually being overlooked!!! Wendykpage (talk) 16:35, 29 October 2023 (UTC)


 * Unfortunately, original research doesn't fit in the article; additions should have sources to back them up. Also, "" is just saying that sources don't support the purported causes. I'm reverting your additions, but I did find a source that supports the "stress" claim, and so I'll leave that part. Kimen8 (talk) 21:26, 29 October 2023 (UTC)