Hidradenitis Suppurativa

ChickinAr · 11-28-2005, 10:05 AM

Has anyone been diagnosed with this disease? I was 3 weeks ago...

Hidradenitis Suppurativa (HS), also known as 'Acne Inversa', is a non-contagious, recurrent disease affecting inverse areas of the body (those places where there is skin-to-skin contact - armpits, groin, breasts, etc.), and where apocrine glands and hair follicles are found. It typically manifests itself 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.
Abscesses may be as large as baseballs in some people, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. These "flare-ups" are often triggered by stress, hormonal changes, or humid heat. Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage.
Persistent lesions may lead to the formation of sinus tracts, or tunnels connecting the abscesses under the skin. At this stage, complete healing is usually not possible, and progression of the disease in the area is inevitable. Occurrences of bacterial infections and cellulitis (deep tissue inflammation) are likely at these sites.
Because of the drainage which may have a foul odor, fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight.
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.
Although the cause of this disease is unknown, very little research is being conducted on Hidradenitis, with Europe at the forefront. There is essentially NO research being performed in the United States! Historically, HS has been considered a rare disorder, because it is difficult to accurately estimate the number of HS victims; they conceal their condition, even from friends and close relatives. Estimates, however, indicate at least 1 million - potentially up to 12 million - Hidradenitis Suppurativa sufferers in the United States alone!

ABumpyGal · 11-28-2005, 02:35 PM

Hi ChickinAr

There's sadly LOTS of ladies with HS here. There's threads on it everywhere if you look. I tear up everytime I read someone here speak of it, as I can't bear to think of anyone else suffering from this dread disease.

ChickinAr speaks the truth ladies. Anyone with lumps and bumps needs to show them to their doctors so we can stand up and be counted! Obviously this disease is not rare, only getting an actual accurate diagnosis is. The more of us that are counted the more likely our suffering will be treated.

I've had HS since I was 12 and was formally diagnosed at about age 26 after finding the HIDE USA site. I was already at stage III in both axilla, breasts, and thighs by the time I was diagnosed. It has since spread even further. Doctors finally threw up their collective hands and now it's "treated" with massive doses of morphine and oxycodone daily. This gave me my life back... I can finally move again! Well, sorta anyway.

The link you posted describes this affliction well. Anyone with this disease should speak with their doctor about the possibility of keeping a supply of emergency antibiotics on hand, or at least get to the ER at the first sign of infection (fever, bump is red&hot to touch, puffiness in skin around bump, nausea, just feeling "off" in general). I've had cellulitis more times than I can count and my own complacency about it nearly killed me a few months ago when I developed "toxemia". These things can kill folks, and quickly!

And no, very little research is being done in the US, which pisses me off to be frank. I'm going to Johns Hopkins in the spring and I'm going to get LOUD until they do something, anything. Well, except Remicade, as I don't fancy dying of TB really. Remicade did cure my MIL's HS though!

I'd suggest going to the "Alternative Remedies" section of this board and reading this thread:
Mary's PCOS Treatment Research

Try anything you can that lowers tumor necrosis factor alpha and androgens, as both have been implicated in HS. The supplements listed in my sig have helped my HS so far, but I just started and you can't expect miracles. What has helped me most is sticking to a decent diet and losing weight. Sucks, but true. Giving up the harsh anti-bacterial soaps/washes for more gentle bodywashes has helped as well.

I'm so sorry you have this disease hon

HS runs strongly on my father's side of the family, so I know it can range from "I get one once in a while" to "well, at least I only have 15 new ones today!". I hope you have the milder version

Eva37 · 11-28-2005, 08:02 PM

Hi

Yes, I have hs too.

feel free to pm me if you want
Eva

mandypurdue · 12-01-2005, 04:43 AM

Is this disease also related to pcos? It seems many of the girls have it I wondered if it were related and if it would get better if the pcos was under control? I am sorry you are going through that. What a terrible disease. I hope you do find something that will help you.

Eva37 · 12-01-2005, 11:16 AM

Hi

Well, I did ask my dr if hs is related to pcos and they said no. But if you research it ......... the answer is yes.

Eva