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HS Basics

Why am I doing it in a basic way, Easy, we are innudated with medical speak and terminology and sometimes its just too much to digest. So, this is just a basic rundown on what HS is or isn't.

I am just one of millions that are afflicted by a disease known as Hidradenitis Suppurativa. In fact numbers from some of the best drs world wide put the prevalence of HS at 1 in 300. That is a LOT of people, in fact that would almost make HS common. So, if you are reading this for the first time, know this, you are no longer alone!

From here on out, I will call Hidradenitis Suppurativia HS for short. Please note that I am not a medical dr or a medical professional. Everything I write is from what I have learned over the years or just my opinnion. Do not use this information in the place of seeing a physician.

So what is HS?

Well, its a potentially disabling disease of the apocrine sweat glands that causes people to have abcesses in the most intimate and private parts of their bodies.  These areas include but are not limited to the underarms, the groin, the inside and top of the thighs, the perianal area, the rectal area, and the breast area.

You do not have to have it in all those areas. In fact, many only have it in one area or another, while others are afflicted in several areas. HS leaves tell tale scars everywhere it hits and these scars are often the only clue to the medical profession that what we have is indeed HS and not some other disease such as sebaceous cysts, folliculitis ( ingrown hairs ) or regular old boils.

What's the difference between Boils and HS and why does it matter?

Oh boy, that's a loaded question!

Some of the differences between boils and HS are as follows: Boils are ALWAYS full of some sort of staph infection such as aureus, or pseudomonas staph, or any of those lovely bugs that anyone can get. In Contrast, HS is almost always sterile! Even when its all full of yuck, you'd be surprised how many still test sterile. This is important so that we don't live on unecessary antibiotics that could kill our immune systems!

Okay so what else is different? Well, boils always have a core to them. HS Never has a core. IT can get all strange feeling and can be hard around the edges and soft in the middle or some weird combination of this, but there is no core. Lots of people tell us we get these back because we didn't get the core out, well, guess what, we CAN'T get the core out, there isn't one!

The shapes are also a telling sign. Boils tend to be really round, But HS lesions tend to be shaped strange and are often, but not always oblong in shape. They also like to create tunnels .  These tunnels are like nice little sculpted out tubes from one lesion to the next. In fact sometimes you can push on one lesion and watch stuff come out a different hole. I don't think boils can do that.

Well you can certainly get a secondary infection like Cellulitis or a staph infection in either HS or Boils, more often you will get cellulitis with HS due to all the trama to the surrounding skin of a lesion.

Another difference would be that Boils are not chronic and recurrent.  HS on the other hand usually doesn't get diagnosed until it is chronic and recurrent and that is in fact one of the only ways to get a diagnosis. You almost have to have repeated flareups in the most personal areas of your body or you will continue to be misdiagnosed.

So why am I drawing a line between HS and boils. Simple, for those who have HS bad enough to be disabled, it would be next to impossible to be approved for disability for boils.  

Is HS Contagious?

People always want to know if HS is contagious? The answer is NO. It is not. In fact, you didn't do anything to "catch it", it isn't catchy, and you couldn't give it to your worst enemy on your best day.  HS is just something you have.  Many feel that there are genetic components, and others feel it is a skin problem and others feel it is an androgen disorder. More on those topics in later pages.

So who can get HS?

HS does not discriminate.  It can turn up in a man or a woman, a girl or a boy, a young child ( though that is certainly more rare). It doesn't matter where you are from, what country, or your ethnicity.

There are in fact people from many many continents and countries that have HS. There are also support groups in many countries including France; New Zeland, Australia, Finland, Ireland,

Myths about HS

There are lots of myths about HS and one of them is that HS is predominant in the African American community. That is a myth.  Like I said earlier, there are people from all over the world who have HS.  There doesn't seem to be one set type of person or ethnicity or race who is more prone to it. It could happen to anyone. 

Another myth is that you have to be overweight to have HS. Not true. Extra weight does not cause HS. In fact many didn't get overweight until they got the disease and could not be active! Exercise and sweat seem to aggravate HS and when that happens people tend to avoid it. While it may be true that excess weight can exaccerbate the condition. It certainly is not the cause. Many got HS when (though it never hurts to lose weight for overall health)

HS is not an STD.  You cannot pass it on to someone sexually! Good relationships have been destroyed over this.  I know people who have been diagnosed as having Herpes and other STDs and seen people kicked out of their homes for this kind of ignorance. It is disheartening to have this kind of disorder invade the most private and intimate and very sensitive areas of your body, but it is salt in the wounds to be treated like you are contagious on top of it. 

If you are reading this, I bet you have been told you have HS because you are not clean. This is simple, That too is a myth. In fact I would bet that HS folk are amoung the cleanest and most hygenic people on the face of the planet. We are always so concerned with the drainage and the odor that we tend to take care of our wounds constantly. I have met many HS people and I have never met one that was "dirty"

Know this, if you are an HS Sufferer, you are not a bad person and you didn't do anything to get this. It is just something you have, it does not describe or define who you are!

To date there is no known cause and no known cure. When you see sites espousing the word "cure" please RUN, do not walk away from those sites. There are many people on the net who prey on peoples desparation.  They will put up false testimonials for various medicines or naturals and claim healing.  Trust me, its snake oil.  To date there is no cure for this.  That doesn't mean there is no hope!

Always remember, HS is just something you have, it does not define who you are.

If you see more basics you would like me to add on about HS, just drop me a line at tferris@citlink.net  I am doing all this strictly from memory and not using materials so that it will sound easy to read and understand. I will be adding links and such to other pages with more information : )