Help for hidradenitis suppurativa in Westlake, OH

Well, my name is Doctor. Paul Hayes and I’m a dermatologist here and today’s presentation is to discuss someone of the condition of hidradenitis suppurativa. It turns out that over the years we’ve seen many patients with this disease and many of the questions of patients have been pretty uniform and what we found is that, so frequently the time that it took to put all those questions and answers together was something that really would became the big discuss a little bit and in order to make this whole thing were easily done we decided to put together this educational video. So that’s the background what we’re going to be talking about here today. Hidradenitis is a fairly common condition that affects 1 to 4 percent of the population of the world is not just a US disease it’s found in virtually every nationality and as such it is as common as psoriasis in yeah because it’s hidden many people don’t have the same information available and don’t have the same understandings that we would have for psoriasis. So, this whole thing came about in order to really pass on our experiences as well as the information about the condition itself you know. Hidradenitis or we just sometimes refer to as HS is something that was first described by a father by the name of Neil back in the eighteen hundred’s and the name for a hidradenitis, Hidra means gland and denitis is inflammation and to succinate to produce. So that our original concept was that this was a disease that came from apocrine or the scent glands found particularly increased areas of the body and so when they renamed this thing, they said this looks like inflammation of the glands that produces the name. Turns out they were wrong. That this doesn’t really happen because of inflammation of the glands whether it begins within the pore. It’s a disease that there is no real test for you know it’s not like have a heart disease you know by pass thing or do an angiogram and there it is. What happens is that it’s a complex of findings and so what people find they have and really what defines the disease is that there are tender recurring inflammations occurring usually in the kree series of the body the underarm the crying the buttock bottom there is under the breast areas for main lemon as well as fellows in which this inflammation swells up it may drain and then as that subsides it no longer it just doesn’t disappear entirely but it may act up time it again and has both the persistence and the long-lasting qualities as well as the fact of its being this long process that people have described characteristic to is that you press here and you drain come over here and the tunnelling that ultimately takes place with us is it again very characteristic and almost part of what defines the process itself. People have this quite literally for years where it gets better it gets worse it gets better it gets worse and this lasting quality of this is again part of the characteristic of what makes HS. Just many therapies have been used for this and often people convinced that I had all of this and that and our average length of time that we’ve seen people having this in looking backwards is somewhere in the order of nine years and we’ve had people have had it quite literally for 20 years so it’s not a process that’s like a simple infection Boyle gee I had it was treated and then it went away never to return. This is quite different and indeed even when one takes cultures of that material there are no pathogens as they’re called there are no infectious things even though they look like my MRSA this methicillin staff, it is not an RSA in spite of the fact that they feel that’s all they thinking about everyone say. In terms of causations this is something that people look for well what is that that makes me have this I want to stop doing this and as it turns out in fact some things that people looked at they may get affected but the infection is not the main cause for this thing. What we now know to happen is that there is a hormone that’s present in normal adults. We don’t see this disease usually in children but the adult’s hormone make their way through the bloodstream to the point on the outside of the oil gland of a pore and once that’s captured there, it turns on that pore to produce the contents of oils and other things that make an adult or adult or what that happens is that there’s a whale which is manufactured from that pore would normally make its way to the surface of the skin where it would then exit and then lubricate the skin. Instead, though of being able to exit it gets trapped inside and it’s basically it just keeps producing but it’s got nowhere to go and when it does that building up it then ruptures and when that for ruptures, there’s all this inflammation that you and I see is this tender kind of thing. In addition when it ruptures part of the body repair process is to produce cells that are very much like a tear they line that area inside the skin to now make the same kind of tunnel that goes from the outside to the back of the earlobe only is now a tunnel that’s under the surface of the and it goes from one pore to the next pore that becomes inflamed and now we have the time where I press here they drain here so this development of these tunnels as a result of the body’s attempt to heal is one of the absolutely characteristic kind of things with this. A it’s something that’s also challenging to prevent and many people come in saying well i’ve read online in all of these things it’s associated with being heavy so people that said well i’ve lost a hundred pounds well that may or may not improve their hidradenitis. We also know that other factors may play a part just be size by the science we know that for some reasons smoking seems to be associated with a greater severity of hidradenitis also but once again like losing weight simply stopping smoking will not necessarily even improve the hidradenitis. Though it’s, it’s, a, it’s a factor but it’s a hit factor it may not be the whole answer we also have in question the issues of diet some people have wondered and have noted that for at least some individuals dairy products might have a part to play in the cause of it but it’s again very inconsistent and just simply avoiding dairy products for many patients is not successful in taking away again it’s another hit we do have some people who do have elevated hormonal things within their system and they have too much of certain hormones that may be present for many people but for most of our patients the hormones that we test for are absolutely normal in quantity is what those hormones do at the outlet or at the point of the pore that seems to be the most crucial element for many women will notice a cycling effect particularly just before period time hidradenitis gets worse and that’s a not unusual thing and again it just underscores that hormones may play a part in this and it may indeed be part of what we look to for you developing certain treatments there are some other associated elements to this condition for example if we look at other processes in which the pore structures may play a part acne for example over half of our patients have a history that they had some need for treatment for acne at some point in their life’s. That’s about 55 percent of people will have had facial or chest acne. We also see in about 6 to 8 percent of people’s pimples and boils that happen in the scalp sometimes to the point where again what split in the other areas of what hidradenitis you can see boils in the scalp you may have hair loss and scarring that occurs because of that intensity. For many men it’s at the back of the scalp that joins the nape of the neck and the same general process. We also know that for about 30 percent of people there may be a cyst at the base of the table just go to the table that’s called a pilonidal cyst often seen not just in the patients who’s there but also in family members a history of this pilonidal scientist or pilonidal cysts isn’t not uncommon. Again, in about 30% of people there’s a family history. Somebody comes in saying I’d recognize you know Dad had boils and that’s a really kind of thing whether they ever had to diagnose of hidradenitis or not, the fact that other members of the family might have been boils is really common and it just underscores they may not got a mean for but this or a relationship with inflamed poor structures in these creatures just really, really, common. We have in some individuals very strong family history as mother to daughter to daughter and that kind of thing and what we find is that in the literature and the publishers of this whole thing, there are at least three large families in which at least four generations of individuals of the found to be and that something was described in the Japanese as well as Chinese as well as English populations of patients and then people been able to try to isolate this to a specific chromosome. Again, this is underscores that for most individuals that have this, the things of here don’t something along with you’re too happy you’re smoking here doing this you’re doing that is not nearly as important as the genetics of what makes us. Us and this is sort of like saying how come some people have that and you know the people talk this is part of our genetic in the chemistry of our makeup. In terms of other inflammation or associated kinds of diseases, we find that other inflammation processes for example inflammatory bowel disease Crohn’s disease ulcerative colitis are both much more often seen associated with hidradenitis than one would expect by chance alone. Same is true for arthritis. A lot of people will come in some noticing, I’ve been just be my arthritis doctor they’ve checked me for things like rheumatoid arthritis but all I have is a hidradenitis and, in some individuals, we’ve treated their hidradenitis and there arthritis is completely disappeared. So, there is this relationship to other diseases that you’ll hear or perhaps you read about also in which there is inflammation associated at times with hidradenitis is something called sweet syndrome and a separate alternative condition usually correct on the legs called pyoderma gangrenosum. What this then surely represents is a total body the inflammation that may take place at which will certainly will participate but other parts of the body may be inflamed as well. A lot of people say well how bad is my hidradenitis and one of the things that everyone is looking for is a yardstick not only to judge how severe is RHS but also to try to gauge improvements whatever therapy you’re using and a fellow by the name of Hurley H-U-R-L-E-Y was the first to say well I think I can kind of gauge how severe individuals HS is by noting what kinds of spots do they have and our Hurley stage one is now recognized as just a single area of severe inflammation that’s there. May be very persistent and we’ve had folks in, that 20 years of one Boyle but that’s still the only spot they’ve ever gotten that of early stage one. Early stage two which is a bit more severe. They have more than one area but with limited tunnelling. So that early stage three the most severe staging is where there are more than two areas in which there is more extensive tunnelling. Now this is a pretty broad category because some people have terrible stage three other people have more focused stage three but indeed this is a system of categorizing how severe is our condition. There’s another condition or another grading system also known as the Sartorius scale and again names that are  not that important but just the fact that people have been trying to pinpoint how bad and how do we tell how much hidradenitis an individual has a Sartorius system tries to assign a value if they got one underarm areas three points you got two under arm, that’s three plus three and a grind it’s another three and you then by noting how wide are the tunnels how long are the tunnels how many bumps do we have one could begin to assign a number value for how bad is it. What neither of those really however measure is well how much pain am I having. How much voter is there associated with the drainage how much am I stinging my clothing because of the drain which is there and these are the things that people with HS have to live with and in deed are beginning to recognize that in a broader scale there is something called the dermatologic life quality index or we’ll talk about it is the DLQI and this is a measure by which we determine how much is this disease really affecting an individual and it’s not just for a HS but the DLQI has also been used in psoriasis too many other conditions that are chronic and affecting skin and needless to say the DLQI in hidradenitis patients if people are severely affected by this disease all of the things we just talked about it makes it difficult and challenging for personal relationships with other people with jobs and employment because it’s hard to do all that when you’re sitting on pots and other kinds of tender areas. Treatments you know everyone has looked for the differences of what may help this disease and it’s almost I think helpful to divide the treatments and their focus into those things that are geared at trying to control the right now inflammation of that spot right at the moment versus those treatments that try to get rid of the more lasting chronic kinds of things in general for either very limited and early stage 1 for example kind of thing all of the focus of treatment is to try to get that area so they’ve done hurting and these anti-inflammation things sometimes they’re used as shots of medicine directly into the spots of the boils sometimes they may be antibiotics although interesting land and of addicts don’t work because they’re killing germs they work as, and, inflammation beaches that’s one of the importance in concepts of this because you know you take an antibiotic for a boil and the infection is clear enough in a few days up to a week or more this is not something that you’re taking just to kill germs and as such it’s a medicine that people will need to take as an antibiotic perhaps for many months or even longer and one must be able to choose medicines that if they’re needed for a longer period that are safe to take is like treating high blood pressure is like treating diabetes you don’t take medicine for a week you take the medicine for as long as that condition needs to be kept under control and you’d be kept in therapy. So, antibiotics and other things sometimes combinations of antibiotics sometimes other medications that have anti-inflammatory properties as there medicine called Dapsone, another medicine called Rifampin, names again not so key but just the fact that there is a whole selection of choices that are each geared that trying to help to take away the tender inflamed spot right now, as well as to try to keep the development of new ones from appearing. In addition, we find that there are certain medications that can be used to try to stop some of that first effect we talked about the hormones and how hormones may turn on these parts. In some women you can block this effect of that receiver that receptors as it is called that three in turn turns out of the pores In many men there’s a little downstream as it’s called. There’s a little bit further along and how these hormones do their thing. There’s a medicine that may turn off some of the effects of those hormones. They don’t change the amount of the hormones the hormone levels are normal you don’t want to change those but what it does is it changes how the body in this bad way seems to react to the presences of those hormones. We also have some patients in home they say well we’ve tried doing things to try to open up some of that pore. The vitamin A compounds while Accutane is a classic medication used for complexions for acne kinds of treatments very powerful medication. It doesn’t seem to work very well in treating the hidradenitis. No one is quite sure why it doesn’t why do the pore respond well to that medicine here but not respond to that same medication in other places. Some of the other vitamin a derivative compound may however have some greater benefits some patients will be shown true that other patients do not. What you seen that is that there’s a whole menu of options for things that may try to control this is the red-hot spot there right now and they kind of then lend themselves also into the next phase of controlling the tenderness of these areas which is something that you have to stay on there for longer periods at times. The last element for kind of addressing this is well what about this spot that’s been there for so long and that has all of that tunnelling will these other medications control it? The answers that may reduce the inflammation but if the tunnel is there the tunnel is there and, in our experience, at least so long as that tunnel remains things that try to reduce pain will do exactly that but no more and until or unless you’re committed to really getting rid of that tunnel you will indeed continue to have problems with this thing reactivating and again it quiets down and then backs up with flares once again. We’ve tried to avoid it Lansing if possible because the Lansing of that produces another issue of tunnel, and so it may relieve a few thing but as far as a long-term thing just simply Lansing areas that are like that doesn’t work. On the other hand, doing something that may remove fully that area whether it’s done with you cold steel’s it’s called a scalpel where you have the area anesthetised the person anesthetised and cut around it. That seems to be very successful at least for some people to get rid of that large multi tender kind of mass and elastic fashion if you got it all out, you’re in good shape. Unfortunately, it’s some individuals you may think you got the whole thing out but there may be unseen extensions that may go below the skin that you just can’t see doing that surgery and unfortunately then for some individuals it’ll come back. We also see in some patients that if wanted to grafted or flat and stretched me to try to stitch up the area that’s had surgery once again there seems to be a greater risk of having things come back. One of the treatments that we have been using with a fair amount of success over the years is to use a carbon dioxide laser to help us in the removal of these not only visible parts but we can also of the use of this identify where the tunnels and tracks go on it’s kind of a special focus of therapy that we’ve sort of been using more so than many other people just because we’ve had the experience of doing it, and in our hand is what we’ve seen is, is, something less than 2 percent of any of the patients that we’ve treated at that spot in returned. You can even be used for other areas such as the scalp it can be used for the peloidal sinus that we’ve talked about. So, it seems have applications for not just hidradenitis as where you sit in these principle crease areas but for other locations that are associated elements to it as well. Other therapies should be used because even though you go ahead and you treat the main thing the risk for everyone is that they will continue to developmental spots as well. So really all of the treatments that we’ve tried to underscore for patience’s let’s help you get rid of the old spots that are just always going to be a problem for you but at the same time let’s consider what treatments might be about to try to prevent new ones from coming to. It’s a complicated issue it’s a terrible disease. We’ve had great successes we’re looking forward to greater successes and part of our thing here is always explore and then try to make them available to people. Those things that we hope will be the newest and the best of these kinds of treatments. We’ll go over a lot of these things as we have opportunity to meet with patients and we look forward to discussing more detail each person’s individual elements of what makes their problems. Thank you for listening. 

What we’ve covered so far has to do with more of a verbal description of this what I like to do is to show you some of what we’ve been talking about. One of the first things we see in any patient we’ve been talking about how follicles are normal and one of the things that we see for a whole bunch of folks is what’s been called the polycombdomal follicle and that’s a mouthful. Basically, it’s where you see two or three blackheads that will all enter into the pore at the same time. You will see it behind the ears or see it over the chest in almost any place you’ve got pores, but that’s a characteristic that you’ll see this in many other skin conditions but it’s a characteristic thing for some patients at least that have hidradenitis. In addition, we talked about how there are these different stages early stage 1 stage 2 stage 3. Early stage one for example and we’re going to show picture as we do this is a single solitary as seen in this particular picture early stage 2 which again, we’re showing it shows the features of multiple spots but with limited tunnels about early 3 it shows a confluent meaning all one big pocket area in which once again press over here and bring over here with this tunnelling that goes under the surface of the skin. In addition to this is what it looks like as the condition I also want to show you some pictures of what we’ve seen and or get people the comfortableness of well what is this thing. Here’s a patient for example that has hidradenitis. It’s a severe pocket of stuff in an underarm area. This is what it looked like before we did the surgery. Without grossing some people out this is what it looks like after the surgery and this just underscores the extensiveness and this and very commonly done right here they will be on the chest it will be in the underarm I’m going right up into the underarm it will then go on to the arm areas of this is what you can see for this kind of individual. The qualities of healing even without plastic or reconstructive surgery though it can be remarkable and it’s comfortable and this is the quality of healing that we would expect it and get hope to speak for everybody and it’s fairly representative of seeing. That that’s excited because of the longer hurts you know the drainage is basically gone. So these are just some examples and again the visual combined with what we’ve been talking up is what we hope to accomplish but just happen again, again a better fell for this. Thank You.