I am a 36 year old women who has suffered since 14. Ther...

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I am a 36 year old women who has suffered since 14. There have been times when the disease has been in remission over the years. However now I have a recurrent abscess in the groin which has been weeping for the past 2 years. I also suffer with recurrent abscesses in my armpits. Forrunately they are confined to these sites. I am depressed and feel I have no quality of life. When will someone find a cure?

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  • Posted

    Hi there,

    I am from Australia and also have Hidradenitis Suppurativa.

    Allied with concerned patients, community members and medical professionals, this recently created charitable organization provides further public health information, and plans to find out more about this disease:

    The Hidradenitis Suppurativa Foundation, Inc. (HSF) is a 501(c)(3) nonprofit public charity incorporated in the State of California on July 26, 2005. The HSF was founded for the sole purpose of funding efforts to dissect the molecular and cellular causes of Hidradenitis Suppurativa (HS, also known as Acne Inversa) to aid in the development and delivery of more effective therapy to patients with this common, debilitating, and eminently chronic disease that affects an estimated 1% of the population.

    My personal advice to those with HS is to seek medical treatment without delay. Depression and axiety are common to this disease, so please talk this over with your doctor.

    Take very good care,

    Robert Howes

    Hidradenitis Suppurativa Foundation, Inc.

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  • Posted

    I know what its like to suffer with this about 8 years ago I had an operation to remove the sweat glands in my both armpits but still get the hidradenitis in other areas.

    I still get depressed and find that a lot of poeple dont understand about my problem and feel dicriminated.

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  • Posted

    HI

    CAROLINE YOUR COMMENT HIT HOME BECAUSE AS WELL AS HAVING SUFFERED WITH HS FOR THE PAST 18 YEARS I'VE ALSO BEEN A PRACTISING NURSE. ALTHOUGH MY WORK COLLEAGUES ARE WELL AWARE OF MY CONDITION AND SAY THEY UNDERSTAND WHEN I HAVE TO TAKE TIME OFF, I'M ALSO AWARE OF THE FACT THEY CALL ME EVERY NAME UNDER THE SUN AND I HAVE WISHED MORE THAN ONCE THAT EACH OF THEM WOULD HAVE A DAY OR SO SUFFERING HS. WHAT ANNOYS ME IS THE FACT THAT THEY SAY OVER AND OVER AGAIN 'OH I KNOW HOW YOU FEEL' BUT THEY CAN NEVER KNOW THE PAIN HS CAUSES OR THE IMPACT IT HAS ON YOUR LIFE. THE PAST 7 YEARS HAS BEEN THE WORST BECAUSE I'VE NEEDED FOUR MAJOR OPS TO RELIEVE THE SYMPTOMS OF THE CONDITION AND EVENTHOUGH I JUMP AT THE CHANCE TO HAVE THE INTERVENTION I KNOW IT ISN'T A CURE.

    I PRAY EVERY NIGHT THAT SOMEONE WILL FIND THE CURE FOR THIS AND WE'LL BE FREE OF NOT ONLY THE PAIN BUT ALSO THE IGNORANCE OF OTHERS. TO ALL HS PATIENTS AND THEIR LOVED ONES GOD BLESS

    CHRISTINE

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  • Posted

    Hi, im a 39yr old woman and I remember getting my 1st absess, I was 18yrs old and pregnant, I did,nt know what it was, I have been getting them continually for the past 21yrs and no doctor could give me an answer as to why I was getting them, they kept putting it down to me been overweight but I was,nt always big, I kept telling them I was more prone to get them around my period but nobody listened, it made me feel very small, the worst was when I went to the hospital er room and one of the nurses asked me had I ever used heroin because it like something junkies get, I think that was the lowest I ever felt because as all us suffers of HS know we would not voulintarily put ourselves through this, there have been times I really could,nt handle the pain and really felt like ending it, I feel ugly and am ashamed to undress, I find myself looking at other people and wonder what its like to be them with flawless skin but this is something I have to live with and I think the older im getting the less tolerant of the pain im becoming... I like to know when will it end....[/b]
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  • Posted

    Hi there

    Just reading your comment. I have had HS for around 14 years now and have tried radiotherapy, various anti biotics, I have had surgery to remove the ulceration from my thighs. I only got diagnosed 3 years ago and it was such a relief to find out I was'nt alone in this. I had spent so long feeling dirty! As for depression now Iknow its not my fault I feel so much better. I work full time which is not always easy and the pain in my thighs and groin is dreadful but my job is office based so once I get comfy I try not to move around too much. as a result when i go home all i want to do is rest. I have now been prescribed roaccutane which so far as with the rest of the treatments has made no difference. seems so slow for a month or so then flares up fast and furious. its hard no one can see your problem and i feel people dont believe me. Iwish I could give you something positive but I cant, I rarely go out, I have lost touch with my friends, I am becoming more and more isolated not through depression but because of the pain getting around. Its a horrible disease.

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  • Posted

    I have had the exact same experience.  I did some research and the solution really is Zinc.  I read an article where people took divided doses of 90mg of Zinc Gluconate and 80% went into remission. I tried the zinc gluconate but, it make it worse for me. Then, I tried Zinc Picolinate...which is more readily absorbed and IT WORKS.  I have been lesion free for YEARS.   Please please please try it....it really does work.  I started with 2x 44 mg per day and eventually tapered down to 44mg 1x per day.  You need to supplement with Copper....2mg per day...this can be found in many multivitamins as zinc can deplete you of copper.  Please try it...my scars are actually as flat ans soft as they could possibly be now and it has literally been years since I've had this condition (after suffering for 30 years).  Good luck!
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