Hidradenitis Suppurativa (HS) More Common Than People Think

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Main Category: Dermatology
Also Included In: Psychology / Psychiatry
Article Date: 25 Jun 2007 - 8:00 PDT



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'Hidradenitis Suppurativa (HS) More Common Than People Think'

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Article opinions: 8 posts

Hidradenitis Suppurativa (HS) is a common, painful, debilitating, and chronic inflammatory skin disease primarily occurring in inverse areas of the skin, e.g. axillae and groin. HS causes painful and chronically recurring, deep-seated follicular nodules, papules, pustules and abscesses, leading to suppuration, fibrosis, and scarring of the skin.

Unfortunately HS has been labeled as a rare disease. But in fact it is not rare, it is only rarely diagnosed properly. HS affects at least 1% possibly 4% of the global population. It indiscriminately affects both males and females, and can be found in many countries, affecting many different cultures. I am also aware of at least one celebrity who suffers from HS.

While death caused by HS is considered rare. It is my opinion that the morbidity rate is grossly unreported or underestimated. Due to the fact that many deaths are caused by suicides or complications arising during treatment. When an HS patient dies, various complications or other factors are listed as the primary cause of death. Thereby distorting the actual number of deaths caused by HS.

Due to this method of recording deaths, HS is often overlooked as a serious or dangerous disease. Also, in my opinion, HS is often ignored by the media due to this underreporting of deaths coupled with the fact that it is an extremely horrendous disease. Over the years, we as an HS community have requested and even pleaded with various media outlets for assistance in spreading awareness regarding HS. Mostly we are ignored. Sometimes we are even told that HS is acne, and that no one has ever died from acne. I assure you that HS is NOT acne and people are dying from this horrendous disease.

I am aware of at least three deaths caused by complications that have happened in the last year within our online HS community. But again, this is not an accurate picture as to how many people are dying from this disease. Many people who have this disease have yet to be diagnosed and/or are not online. I am certain that most deaths caused by HS are never recorded as such.

There are millions of people worldwide who have this disease but have not yet been diagnosed. Please consider helping us spread awareness so that we can find these people before they commit suicide or die of complications.

-- Non Profit Organizations Supporting Research and Awareness Regarding HS:
hs-foundation.org
hs-usa.org

-- These are pictures of my Portuguese friend Adelino Picao:
picao-hidrosadenitesupurativa.com/index_ficheiros/HS3.htm
To translate his site into English go to his home site and click on the translation button:
picao-hidrosadenitesupurativa.com

Please also see:
hs-usa.org/hidradenitis_suppurativa.htm#images

Written by: Ruth Breitrick
Copyright: Medical News Today
Not to be reproduced without permission of Medical News Today

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Visitor Opinions (latest shown first)

my husband

posted by Dana on 24 Apr 2012 at 10:53 am

my husband has had HS since he turned 24 years old, he is now 36 and had been through 5 surgerys which 3 have been with skin grafts and this disease is still present. he had is last surgery in Dec 2011 and here we are 4 months later and has already had a flare up as the doctors call it. My fear is that one day he will die from this disease being that he was mis dignosed in the beginning and is now in stage 3. the doctors tell us that he will never be able to return to the jobs that he loves to do since they make him sweat and end up in a flare up. He can not do a sit down office job in a AC building and SSI will not help out either so are family has struggled for many years. of course people with HS are depressed and it also puts alot on the families too. What else are we suppose to do ?

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suffering from Hidradenitis Suppurativa since I was 6

posted by Anonymous on 20 Apr 2012 at 9:47 am

Hi I am 16 years old and I have suffered from HS since I was 6 years old. When it first appeared in my groin I had told my mother and she claimed it was acne due to not cleaning myself properly. I had gone for 10 years with out treatment. I finally could not stand the pain and discomfort and begged my mother to take me to a doctor despite her arguement that the doctor was simply going to tell me that it is just severe acne. The doctor diagnosed me with stage 3 HS and I have been getting treatment for it ever since. I had two surgeries although they helped with my outbreak in my groin it is not gone and the HS moves to a different location. My mother is now very supportive and recently purchased a at home laser hair removal machine and I believe it has helped control the outbreaks. I would suggest it to anyone that is an HS sufferer.

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H.S. is no joke!

posted by Shakina on 15 Mar 2012 at 3:38 pm

Hello everyone,

I am a 33 year old female with 4 children, and a husband who I know has to love me. This disease doesn't just work on your mind and body, it also reaches out and hurts your loved ones spirit and mind as well. I have had this disorder from age 10, that was when I had my first surgery. Unfortunately I wasn't diagnosed properly until I was 21. Over the years I have grown resistant to many of the medications my doctors (which are teams of specialist) have put me on. Many of my doctors have basicly wrote me off.

I have been so depressed and angry at the world for not wanting to understand my disease. Thanks to my H.S. group on Yahoo.com I know I am not alone. To my H.S. sisters and brothers just keep surviving.

Thank you!

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A better climate?

posted by Penny Jarrell on 21 Jun 2011 at 4:11 pm

I was wondering if there is a climate in the USA that makes life easier for those of us that suffer from HS I am in stage 4. I have had one laser surgery and it helped the one area for almost a year, Now it is back in that area full force. Have had it for 40 years. Now I am getting tired of fighting. Thank you for any information.

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suggestions

posted by seinna on 3 Oct 2010 at 3:06 pm

charlotte i have had hs for about 14 years now and i have tried many things-i hope the following advice saves you some time, pain, and surgeries.

first of all, yahoo has a great support group for ppl with HS-you should check that out.

second: doctors are often very ignorant about this disorder. they are going to throw a bunch of useless treatments at you. u really must research this on your own and educate your doctors most times, and dont let them do whatever they want to you. antibiotics can help for awhile, but your body will build an immunity to them and you will get switched to another until you are immune to that one, and so on.this can and often does go on for years. during that time you may have to deal with side effects. also-hevean forbid you ever really need to take antibiotics for something else, you may end up being immune to the ones you really need.so not the best option.

also surgeries are really a bad option. it has been proven over and over that the disorder will often come back right at the site of surgery (this has happened to me several times), it will break right through the scars or set up shop right next to them. or move to a different part of your body. you dont want to get all chopped up, and grafted-only to find that your still at square one. worse even, because you dealt with all the pain, infections and healing of surgery.worse you now have more scars to add to your collection.worse tha square one. surgery is really a last resort, if a realistic option at all. but doctors will often tell you its your only option. dont belive it, and my advice dont bother.

what the doctors CAN do for you to help is:

injections into the lesions themselves is painful but can help. they have used kenolog injections on me and it has helped.ask about that.

LASER treatments have worked WONDERS for me and other HS sufferers. problem is that insurance dosnt cover it usually and it is expensive. there are several lasers that have been shown to be effective. i forget the first one i tried that helped, but the second one i tried was a carbon laser, and i have been in remission for a year now (with a few MINOR outbreaks). i recently saw a company that is selling an at home version of a diode laser which has also been shown to be effective in treating HS. you can buy this at home laser for about $500 bucks which-depending on where u live, can be cheaper than one laser visit at the doctors office. the laser is sold to ppl who want to permenently remove hair at home. its different than electrolysis, because it doesn't just damage the follicle- it completely destroys it. Hair folicles are suspected to be part of the HS problem, and suffers who have had permenent removal of hair have also reported an improvement of thier HS-so even if ALL the laser accomplishes is perm hair removal, it should help. nut like i said this particular laser has been used to treat HS-so maybe, just maybe, you will also be able to use it on lesions during a flare up, or areas that u know may flare up to prevent that from happening. i think its worth a try.

lastly what you eat, how you take care of your body, hormones (particularly around your period for women) and stress are all triggers. stress can be a huge one. so u have to figure if your eating stuff that may be contributing to your flareups (maybe you allergic or not processing something correctly_some say gluten is a big problem for HS suffers), make sure your exercising and finding ways to release stress or not stress in the first place.you notice u get HS in areas where skin meets skin? areas that rub togeather? under arm pits? in the groin where everything comes togeather and rubs as we simply walk? under the breasts where skin overlaps? well this is something to consider. people who have HS and are overweight tend to suffer more, or in more areas as they my have areas on the back, stomach, even the back of the neck which rub togeather ("rolls"). as beautiful and healthy as a person may be at whatever weight they are-if they have HS, and they are overweight, they may want to consider losing at least enough weight to cut back on the skin to skin rubbing just for the sake of HS.

because you say you get it under your breast i would say try wearing a bra (if its not too painfull) 24/7. sleep in it. i often do (i have never had a problem under my breast but i suspect the fact that im always wearing a bra may help, my aunt who has hs got in in the breast area alot) just because it prevent the skin on skin rub. it also helps you to not sweat under your breast (or the fabric absorbs the sweat) which is a definite contributor i think.

you also need to be vigilant about keeping areas that are effected clean and dry as possible.bacterial on your skin that gets into glands?follicles that then become clogged = OUTBREAK!!!! this does not mean your dirty. i have had doctors try to tell me that. but it does mean you have to be cleaner than the average bear because your skin is just more sensitive to bacteria. antibacterial soap is your best friend. take as many showers a day as you can squeeze in (2 is fine if thats all you can do). SCRUB those areas (exfoliate them)with a antibacterial soap or hibiclense every time u shower. this releases dead skin cells that can plug gland and follicles).carry antibacterial wipes or a little bottle of antibacterial soap and a washcloth around in your bag. when your out and about if you feel yourself sweating, when u get a chance, go to a bathroom and just quickly wipe down the areas. its ok to sweat, but u dont wanna let it sit on your skin all day collecting bacteria.

when you do get a cyst, use hot compresses on it to bring it to the surface till it drains. once its up to the surface before it opens get some sea salt and grind it fine(between two spoon or something), mix with a little water (bottled is best) so that its like a paste. slather it over the cyst and cover it. i tried this last time and the cyst was open and draining within 20 miniuts. heres the hard part. even after its open, let it drain as much as it will, clean the area with antibacterial soap and salt pack it again. yes its gonna burn!!!like hell!!stand infront of a ac or fan. after a while the burn will subside. if you cant stand it thats ok, a few mins is better than nothing. but its important the salt gets in there cuz its gonna kill off that bacteria and aid in healing it from the inside out. my last cyst i treated like this (for the first time) and it healed so fast and with hardly any scarring....hasnt been back since (couple months)

theres more but i figure this is a good start. wish u the best, and ur not alone;)

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I have just been diagnosed with HS.

posted by Charlotte on 30 Sep 2010 at 12:51 pm

Hi my name is Charlotte, I am 34, was born with Herpes Simplex B(HSV) which attacks only my hands and feet, last year I was diagnosed with Osteoarthritis(OA),I went to see my Dermatologists 4 weeks ago and was diagnosed with Erythema Multiforme (EME) as well as HSV & OA, then my doctor sent me for a breast screening thinking the lumps on my breasts 'could be' cancerous, to be told I am HS sufferer, what else can they throw at me?

I suffer with the HS under my arms, breasts, groin and on the stomach. I feel rather stressed at this moment in time, which isn't very good for my other skin complaints....

Is there any good advice that anyone can give me to help aid this disease.

Thank you

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Agree - Re: Hidradenitis Suppurativa (HS) More Common Than People Think

posted by Michell on 14 Jul 2010 at 2:21 pm

I absolutely agree with all statements in this article. I am a current suffer of HS and very depressed. I am married with two kids and really have no life. I am always in pain as my condition is in my groin and backside. Which also doesn't allow for much intimacy with my husband. So far he has been very good...he doesn't fully understand what I am going thru and I can tell he often doesn't want to hear about it. I have had several surgeries to remove this hideous things and with each time they only get worse. I am now missing 3/4 of my left labia due to my latest surgery. I am feeling more and more worthless. So...yes this definitely deserves some attention...publicly!!!! people need to understand what we are suffering and it is very serious!

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Hidradenitis Suppurativa

posted by Minerva Reyes on 6 Jul 2007 at 5:28 am

My son who is 20 years old has this terrible disease and is in Stage 3 and I wish it was me having this. He is so depressed and unsure about himself right now. We have sent letters to senators, president, insurance commisioner and TV stations but no mention to the media about this. We just wish they would find something that would help this disease which I know there is something out there but we do not know yet what it is. Our dermatologist has his tissues growing and testing at Emory in Atlanta and in Stanford, CT.

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