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
Oct 26 2009 3:30 AM
Oct 26 2009 3:28 AM
Oct 25 2009 4:39 AM
Oct 23 2009 5:40 AM
Oct 22 2009 4:47 PM
Oct 14 2009 9:38 PM
I just wish sometimes I could share his pain.
Sep 24 2009 2:01 AM
Sep 14 2009 2:02 PM
Sep 10 2009 11:13 PM
Sep 8 2009 4:47 AM
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.