Hidradenitis Suppurativa Awareness

www.myspace.com/hidradenitis_suppurativa

Hidradenitis Suppurativa - Often referred to as the Hidden Disease

  • Hidradenitis Suppurativa Awareness

  • 42 / Kadın
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  • Genel

    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

Ne Diyor

Hakkımda:

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!
..

Kimle tanışmak isterim:

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

Yorumlar

10 / 201 yorum görüntüleniyor
  • 17 Kas 2009 13:45

    My husband is now in the hospital for another surgery. He just had one a month ago and it opened up with infection. Please keep him in your prayers. I know he will be ok . I thank everyone that post their comments on this wonderful myspace page. Now I know he is not going through this alone and it shows you all are fighters and will not let HS win.
    Thank you and good luck to all of you.
  • 13 Kas 2009 05:45

    Hey! Just stopping by to see how everyone is doing! Found a Doctor who Knows alot more than every other doctor ive been to and May be facing surgery sometime soon, They said that My best bet is to have the surgeries done, Im scared, nervous not so much as going into the surgery but afraid of the outcome afterwords such as Pain, Infection, Reaccurence in a diff spot on my body all the normal things to be nervous about. If anyone has some Soothing advice or a good old fashiond pep talk Id love to hear it right about now Thanks! xoxox Jess
  • 26 Eki 2009 03:30

    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
  • 26 Eki 2009 03:28

    I have read alot of articles that say that your diet & smoking have alot to do with HS
  • 25 Eki 2009 04:39

    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.
  • 23 Eki 2009 05:40

    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
  • 22 Eki 2009 16:47

    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
  • 14 Eki 2009 21:38

    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.
  • 24 Eyl 2009 02:01

    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.
  • 14 Eyl 2009 14:02

    hi thanks for the add. I am going for my second surgery today on my armpit, wish me luck!!!