Hidradenitis Suppurativa Awareness

www.myspace.com/hidradenitis_suppurativa

Hidradenitis Suppurativa - Often referred to as the Hidden Disease

  • Hidradenitis Suppurativa Awareness

  • 42 / Female
  • US

133399719|42|11111|http://c3.ac-images.myspacecdn.com/images01/100/m_cf97cf5f445f6711999c9654e320d422.jpg

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Interests

  • General

    Among other things I volunteer my time to support research and awareness of the disease Hidradenitis Suppurativa (HS)

    Support the HSF by using Goodsearch!
    GoodSearch: You Search...We Give!

    You can also help the HSF by encouraging others to search. Just use this link:
    http://www.goodsearch.com/?charityid=849 665

Blurbs

About me:

Hidradenitis Suppurativa (HS), is a physically, psychologically, and socially disabling disease affecting inverse areas of the body (those places where there is skin-to-skin contact - armpits, groin, breasts, buttocks, etc.), and where apocrine glands and hair follicles are found. It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage (suppuration - hence the name) involving significant scarring.

HS typically goes undiagnosed for years because patients are ashamed to speak with anyone. When they do see a doctor, the disease is frequently misdiagnosed. Only relatively few physicians are able to recognize it and even when they do, suggested treatments are often ineffective, temporary and sometimes even harmful. There is no known cure nor any consistently effective treatment; what works for one person may not work for another. In advanced, chronic cases, surgery is often the choice, but recurrences of HS are not uncommon.

HS has been categorized as a "Rare" disease. But it is not rare, it is only rarely diagnosed properly.

Please, stop hiding and come join us here. Let's show the world how many of us exist. YOU ARE NOT ALONE.

For more information regarding HS see:

The Hidradenitis Suppurativa Foundation (HSF) at http://www.hs-foundation.org

and
HS USA at http://www.hs-usa.org


NOTE: If you are requesting to be added as a friend please also send me an email explaining why you wish to be added, if you have HS or know someone who does, etc.

SECOND NOTE: Please do not post "Apps"/etc. I reserve the right to edit or delete anything posted that I do not feel is appropriate for this "Awareness" profile. Please do not take it personally.

Thanks!
..

Who I'd like to meet:

Someone who can cure this disease or at least come up with a viable treatment option.

Comments

Displaying 10 of 202 comments
  • Oct 26 2009 3:30 AM

    my husband is having surgery Monday @ 1pm we have finally found a surgeon who actually has two other HS patients! He is going to be pretty invasive tomorrow with the surgery, he said he will clean out every tunnel & all sores. Keep us in your thoughts & prayers please.....Deaneen & Randy
  • Oct 26 2009 3:28 AM

    I have read alot of articles that say that your diet & smoking have alot to do with HS
  • Oct 25 2009 4:39 AM

    this may sound strange, but over the years i have found out certain foods really aggravate hs; such as oils/fats which are solid at room temps, hydrolyzed/hydrogenated soybean oil, nuts, highly processed white breads, caffeine, coffee, cheese, real 1/2 and 1/2 creamer, ice cream, pizza, one of the worst is frostings. when i eat these foods or any foods in this type of grouping, i have to flush my body for days and days with water to chase out the fats so they will not adhere or deposit themselves and then come out through my very sore hs ducts...and those fats do seem to do just that. i have had hs since i was in my early 20's and many doctors with no diagnosis. finally properly diagnosed last year at 36 while i was a few months pregnant.
  • Oct 23 2009 5:40 AM

    My Husband has just been admitted to St Joseph's hospital in Lexington, KY for his HS nothing seems to be helping his wounds/sores/boils he has been on heavy doses of meds including I.V. for over three months & is the same if not worse. His Dr has recommended that he have surgery, praying that he can have some relief & a better quality of life, instead of constant drainage, pain & suffering. Thanks for listening, God Bless
  • Oct 22 2009 4:47 PM

    I found out I have HS this march I have my first surgery this monday. I was given 2 choices either take out strips from under my arms one by one as they heal or one big patch and I would have to have a wound vac. Just curious to know if one heals better then the other? Also I just started taking Zinic, probotics also was told to try tumeric but read that it could be a blood thinner didn't know if I should take that while starting surgeries? Thanks
  • Just being me..... Online Now!

    Oct 14 2009 9:38 PM

    My husband had his 6th surgery today and it went well but we found out the Hidradenitis has spread to another part of his body.
    I just wish sometimes I could share his pain.
  • Sep 24 2009 2:01 AM

    i just had a surgery today last year had ex cession on my right armpit. . . . today was my thighs. . . .but i came away from this surgery very upset and unsatisfied. i am hoping to get some emails from people on here regarding the situation. on both thighs combined just the inside thighs i have well over a hundred spots. Today i went in expecting all the affected tissue and spots to be removed as this seems to be the only way noted to successfully help control the outbreaks. . . yet i wake up and find the surgeon has removed only 7 of the spots . . . yes just seven. . . . this seems pointless and has really upset me. . . . i am looking for some thoughts and input. . . please help and email with feedback as i am almost in tears.
  • Sep 14 2009 2:02 PM

    hi thanks for the add. I am going for my second surgery today on my armpit, wish me luck!!!
  • Sep 10 2009 11:13 PM

    I just had my 4th surgery for this in the groin and buttocks area...and it seems that there are some people out there that really don't understand how painful this is....I wish they would conduct more studies and even find some solid therapy or successful treatment options. Bless you for this site, at least I know there are over 300 people that know what I am going thru.
  • Sep 8 2009 4:47 AM

    i'm 16, i'm currently going through surgeries in brenners children hospital in NC for my HS,
    my surgeon just done my breast and left under arm 3 weeks ago, it's a tough recovery, i'd like to ask for prayer and comfort from others, this gets so scary sometimes.

    i have a few more surgeries to go through, next he's doing my right under arm.
    then after that recovery, below my waist and thighs and stuff.. idk how many surgeries that will be.

    this first surgery has seemed to be helping so far, he removed all the infection and skin ..
    i did tear underneath my breast, so he'll have to do a skin graft there when i'm healed.

    this surgery is amazing, i hope and pray it works.