Does any one have or know anything about HS? It is a rare disease that affects 1% of the population..?

-I have most all info that can be googled Im looking for personal experience information
:o) thank you

Hello:

I usually check the skin section and not the infectious diseases area. I suffer from Hidradenitis Suppurativa and have for 35 years. I am assuming that is what you are referring to and not to Herpes Simplex? I will assume Hidradentitis Suppurativa and continue using the accepted abbreviation for this disease and answer accordingly.

Are you a sufferer asking questions or are you a researcher? It doesn't matter, I am just curious. The best information that you can access is here:

http://hs-usa.org/hidradenitis_suppurati...

If you want medical papers then go here:

http://www.hs-foundation.org/

If you want real live people relating to each other, asking you other questions on how to cope with this disease then there is a support group through Yahoo Groups. I think it is Hidradenitis Worldwide. It is e-mails that you submit and get answers and support along with lots of ideas.

As for personal experience information - I could fill books with my own trials and tribulations. Got it when I was 9, suffered for 35 solid year and still going. I have had numerous incisions and drainage, many minor surgeries to remove bad areas. Its really painful at times, it is smelly, gross and I don't want to be around me when it really bad. My affected areas is my butt and my inner leg/groin. I am luckier than some because it has never gone to any of the other areas that it can. ie. armpits, breasts, etc. Because of the areas affected I don't own any pants or skirts that are any lighter than a dark green. (The abscesses drain and explode on their own timetable and you don't want a mess on your white pants for all the world to see) I know about quite a few people who are disabled and unable to work because of this disease. Again, I am lucky I am still a functioning sufferer.

It is a debilitating disease, I have scars on top of scars and the skin in the affected areas almost looks like burned skin. The skin can be very sensitive because it is so inflammed and scarred that sufferers have to be careful what products and even what type of tape we can use. I know for myself that I can only bandage draining abscess for about 2 days and then after that I will pull the skin off when I pull the tape off which causes other problems.

HS is for not for the weak, it is a very trying disease because most people don't know how nasty it can be. They think it is a simple boil and it shouldn't be a problem but let me assure you it does try to rule your life. The trick is to not let it.

I hope I helped you some and I hope you are not asking because you think you have it....it saddens me when I hear about others. That is one reason why I check these questions because I figure at the very least I can possibly point other sufferers in the right direction to get some help or at the very least be able to label their problem for them.

ms_lila,
Is there any way I may contact u so that I may speak 2u about this. I have recently been diagnosed w/ HS &it seems there is NOONE that knows about this-it would be nice 2 speak w/ someone who has personal experience.
michelle.allamerican@yahoo.c... Report It

I am sorry but what is HS?

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