I was diagnosed with "Stage I" HS over 20 years ago. If you don't know what it is, it's a little known "condition" that starts out as someone who tends to get "boils" infrequently in "uncomfortable" places. As such, it's usually misdiagnosed in stage I. In stage II, the "lesions" come more often, sometimes in "clusters", and sometimes, they open up and ooze, but just as often, they tend to break under the skin and "tunnel" to neighboring cells where new lesions will then form. This is usually treated by lancing the lesions that get too big and giving massive amounts of antibiotics. This might "get rid" of the lesions at the moment, but they will come back. At some point, some well meaning doctor will try to prescribe something like Accutane to get rid of it. For those brave enough to take it, it works for some of them while they are taking it but "comes back" after ceasing the treatment. Did I mention that there is no cure for this? There are only "treatments" to ease pain or inflamation. Oddly enough, some people can progress to stage II and never go to stage III. (Or be in stage I and never go to stage II.) Stage III comes when the lesions become chronic (along with the associated pain). Lesions are constantly forming, opening, oozing, and spreading and bringing pain and scarring. Options at this point are limited to "long-term" use of antibiotics (which don't work) and plastic surgery (which has a 50% chance of working).
HS is referred to as an "orphan disease". Basically, this means that so "few" people get it that relatively few people are interested in researching. There's no "huge push" by pharmaceutical companies to "find a cure" because it wouldn't be "profitable" for them with "so few" clients. Actually, I think that there are more people out there that have it. But because of the "nature of the beast", many doctors misdiagnose the "ailment" until a person has already progressed to stage II. And because the lesions occur in "private" places, people tend to be "ashamed" because they and doctors invariably turn to "poor hygiene" as a cause (which is not true).
I was diagnosed by a dermatologist with HS over 20 years ago by a dermatologist. I was in late stage I. I am now in stage III---and have been for over 15 years. It's not fatal, or contagious, but people with the disease have a tendency to isolate and become depressed in addition to the disease. Did I mention that there's no cure? I finally "bit the bullet" and applied for disability. I started receiving it this summer. I had been laid off of the last 2 jobs that I had. Although, it wasn't specifically mentioned, I had been talked to by HR about "personal hygiene issues"--directly related to the HS.
I'm posting this here for 3 reasons. First, I think that there are people out there who have it and don't know it and/or have never talked to anyone about their "boils" in embarrassing places. Secondly, because one of the "triggers" for "outbreaks" is said to be smoking---if you can quit smoking, the outbreaks are "fewer", so I'm told. And quitting smoking for me has never been an option. And, finally, because I've recently found something that actually helps! And it's not an antibiotic! It's available in "health food" stores and online from Walgreens. It's relatively inexpensive. Oh, and one more thing, they THINK that it might be an auto-immune disease as it shows up more in people who have rheumatoid arthritis, fibromyalgia, IBS, and other auto-immune diseases.
HS is referred to as an "orphan disease". Basically, this means that so "few" people get it that relatively few people are interested in researching. There's no "huge push" by pharmaceutical companies to "find a cure" because it wouldn't be "profitable" for them with "so few" clients. Actually, I think that there are more people out there that have it. But because of the "nature of the beast", many doctors misdiagnose the "ailment" until a person has already progressed to stage II. And because the lesions occur in "private" places, people tend to be "ashamed" because they and doctors invariably turn to "poor hygiene" as a cause (which is not true).
I was diagnosed by a dermatologist with HS over 20 years ago by a dermatologist. I was in late stage I. I am now in stage III---and have been for over 15 years. It's not fatal, or contagious, but people with the disease have a tendency to isolate and become depressed in addition to the disease. Did I mention that there's no cure? I finally "bit the bullet" and applied for disability. I started receiving it this summer. I had been laid off of the last 2 jobs that I had. Although, it wasn't specifically mentioned, I had been talked to by HR about "personal hygiene issues"--directly related to the HS.
I'm posting this here for 3 reasons. First, I think that there are people out there who have it and don't know it and/or have never talked to anyone about their "boils" in embarrassing places. Secondly, because one of the "triggers" for "outbreaks" is said to be smoking---if you can quit smoking, the outbreaks are "fewer", so I'm told. And quitting smoking for me has never been an option. And, finally, because I've recently found something that actually helps! And it's not an antibiotic! It's available in "health food" stores and online from Walgreens. It's relatively inexpensive. Oh, and one more thing, they THINK that it might be an auto-immune disease as it shows up more in people who have rheumatoid arthritis, fibromyalgia, IBS, and other auto-immune diseases.
I'm allergic to many antibiotics, and because of HS, I am "immune" to many of the others. On the plus side, I have found that with my "
Hang in there and thank you for bringing this disease out in the open, more people need to know!
