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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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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,
Hidradenitis Suppurativa Foundation, Inc.
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I still get depressed and find that a lot of poeple dont understand about my problem and feel dicriminated.
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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
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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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