Typically developing in stages, Hidradenitis Suppurativa (HS) is a chronic skin condition affecting the apocrine sweat glands, and leads to inflammation, infections, and constant pain. Often misdiagnosed and misunderstood by doctors, HS also leaves sufferers feeling shameful, in part thanks to the common misconception that lack of hygiene or obesity are to blame.
We'll also be talking about rare diseases in general, the lack of medical attention they receive, and why it's important for people to be informed and seek out the right care. If you suspect that you or a loved one might have HS, or any other condition you are afraid to speak of, then we hope you'll join us from 2-4pm EST (8-10pm CET). You are not alone.
Running Time: 01:41:00
Download: MP3
Here's the transcript:
Jason: Welcome to SOTT Talk Radio. I'm your host Jason Martin, and with me tonight are co-hosts Niall Bradley,
Niall: Hello.
Jason: Juliana Barembuem,
Juliana: Hi!
Jason: And Laura Knight-Jadczyk.
Laura: Hello.
Jason: Tonight's show: Hidradenitis Suppurativa, Verneuil's Disease, or 'great balls of pus all up in your junk'. Nerves shaken, brain rattled? Well, fear not. We're about to get the skinny on this more-common-than-you-think illness, with a world renowned expert. Rapping for the north east side Clinique val d'ouest, is Dr Philippe Guillem. Specializing in visceral and colonoproctological surgeries, and recent winner of le Prix de Qualité et Sécurité des Soins.
I hope I didn't butcher that too bad!
(Laughter)
Niall: Thank you Jason for that introduction. Well, with a name like Hidradenitis Suppurativa, it's perhaps not immediately obvious what medical condition we're talking about today. However, if you take a moment to look up suppuration in the dictionary, you'll discover that it means "The formation or discharge of pus", which should start to give you an idea. Hidradenitis is a chronic and stubborn skin condition, centered on inflammation of large, specialized sweat glands, the apocrine glands, that are found mainly in the armpits and groin area.
These areas show a distinctive mixture of boil-like lumps, areas leaking pus, and scarring, which can be itchy and usually painful. Also, the lumps hurt an awful lot if they're pressed. Aside from the pain and unpleasantness of this condition, it's also embarrassing and unsightly. Now, if you've ever suffered from repeating boils, often, though not always, in private areas of the body, or if your "acne" during puberty never quite went away (or in fact if it worsened), you may in fact be at risk of developing what we're talking about today.
We're very fortunate to be joined by one of, if not the, world's top expert on this condition. Dr Philippe Guillem studied medicine at Lille in the north of France, and then in Lyon, where he has worked at the Clinique du Val d'Ouest since 2006. He's a specialist in enterology, and has published numerous papers, many of them in English. In the course of performing many surgeries on cancers and other chronic diseases of the digestive system, Dr Guillem became interested in - I'm gonna call it H.S. from here on in - after he noticed that many patients were coming to him with similar symptoms.
At this point he has seen over 300 patients suffering from H.S. and has performed single or multiple surgeries more than 450 times. Being in touch with these patients on a regular basis inspired Dr Guillem to constantly improve medical care for them, and to research as best he could to find out what is causing this condition. Dr Guillem has been formally recognized in France - Jason mentioned the award there - through an award, or Prix spécial, in honour of all his work towards this. It's the way he provides patient care from start to finish, not just the surgery - the follow up care, that includes counselling, dietary advice, special treatment with a hyperbaric chamber for faster healing, and post-surgery services for nursing and so on, so forth. So it's a very interesting topic we've got today, and also, I think we'll find a lot more prevalent than people have ever considered.
Jason: Wicked fun.
Niall: It's fun. And we've got some stories about it.
Laura: Yeah. And I think it's my turn to talk, as Jason's mother.
(Laughter)
Laura: Because I can give a little bit of the story about what happened to him from, you know, the side of the parent. He, apparently, started having these problems when he hit puberty, but as the description of the disease explains, it's so embarrassing, and especially to a young boy who is in the pubescent stages, that they're certainly not going to tell their mother about it for god's sake.
(Laughter)
Laura: And he didn't. He would not tell me how he was suffering. And this went on for several years, and the truth is, since he wasn't telling me what was happening, what was going on, I perceived it as just simply that he was not being clean enough, that he didn't clean his room often enough, that he didn't hand his dirty laundry over to me to be washed, that he was - you know, there were several things.
And of course he didn't feel well either. So, since he didn't feel well, since he was in pain, he was not as vigilant about keeping his room clean, making his bed, putting his things away, all things a mother expects a young boy to do. So I was in a constant state of war with him.
Jason: And for those of you joining us in the chat room, they'll be posting bare-ass baby pictures of me next.
(Laughter)
Laura: No I'm not going to do that.
Jason: As if the horror and embarrassment weren't enough!
Laura: Well anyway, by the time he was 15, he had one of these boils that the condition causes, which was so bad that he had to tell mom. And when I saw the darn thing, I was absolutely horrified; absolutely horrified. I mean, I can't even...
Jason: I remember this, it was crazy! I thought, actually, that the problem was that I had sat down too quickly or something. I had been convinced of this, because she said it's a boil, and, you know, how does a boil form and stuff? Well there was some sort of wound, and something got caught in it, and stuff like that, and then it sealed over, and then it started to, you know - I guess the simple term would be 'rot' inside there - and then form pus.
So I thought that I had, like, sat down too fast or something, and hurt myself. So here I have this gigantic boil that was probably about the size of one-and-a-half silver dollars or something like that, at the time, right at the top of my butt crack! You know, come on, what else can I say? That's where it was.
And I don't think you can really appreciate how crazy the whole situation is; I mean it's quite comic. If you had seen it in a movie people would be rolling around laughing, because basically, you know, I'm having trouble sitting down, having trouble moving after a while, because that area kind of jiggles and moves around when you're walking.
So finally I went to her, and I'm like, well, I've got to do something. Because I tried to do it myself, and you don't understand, they are very painful, and you kind of grit your teeth. After a while I got so accustomed to it that I could take care of it myself, especially after this particular situation, which I'm going to explain (Laughs). Because if I'm going to be shamed on live public radio, god damn it, it's going to be me!
(Laughter)
Jason: Right? Because she basically had to lance and pop this thing, you know, because it was really painful, and at the time our understanding was that the best thing to do...
Laura: Hot soaks first...
Jason: Hot soaks and then pop it. And so there I am on the bed with my pants down around my knees (laughing), and my mom on top of me! Basically what had happened is, because of the pressure of me sitting down on it, it seems to have just caused it to kind of expand. So while on the surface it looked like a certain size, really it was quite large, and so it just kept [lost in laughter]. And at one point she was squeezing it, and then all of a sudden she jumped to the side because it had shot something out, and it barely missed her!
And of course, after that situation, I sure as shit didn't want to get someone to do it again, because it was really quite horrifying. So from then on I started kind of taking care of them for myself. What I would do is I'd get, like, a trash bag, and I would use it like a tourniquet on the area, and then roll it. I would tighten it really, really tight, and then roll it across the area, because it's really hard with your fingers, it's really painful, so you kind of have to do it (grunt!) real quick. And then that kind of takes care of it.
Laura: Let me continue here.
Jason: No, no, no. No more stories about my - because it is, they say it's a shameful disease, and you can't help but be kind of really embarrassed!
Laura: Well yeah! And the thing is, when a parent doesn't know that this is what the child is suffering, they think that something else is wrong, you know? That the kid is just being rebellious, or not wanting to do the things they're supposed to do. So of course I have a lot of guilt, because I didn't know what was really going on. He wasn't telling me what was going on. Years went by! And he ended up with another one of these things on his neck.
And that was, I think, his first surgery. He had to go in and have this thing removed from his neck. Well, at this point, I'm starting to get a clue that there is something going on here. You have somebody who has repeating boils, and, you know the imagination just goes crazy. So at that point, I just didn't really know what to do; we were trying everything. He was soaking in... god knows, anything you could name or mention.
Jason: Well I mean it got pretty bad. At one point I had gone to the dentist, and the dentist had prescribed me some pain killers, which I didn't really have to take all of them. And so when I got this thing on my neck, it just blew up. I was in Basse-Normandie at the time at this martial arts stage. And I got this huge thing on my neck. So I was there in the hotel room trying to get some relief from this thing, and I ended up just basically having to take some pain pills to get through it until I could get back home, and so that's when we went to the doctor in Moissac.
And this guy was, of course, what you really would expect from kind of like a movie doctor. He was very self-assured, very confident, he knew exactly what it was: it was an ingrown hair and I needed surgery, so he said okay, we'll take you into surgery. And what had happened was they had developed symmetrically on the back of my neck, so what he said was "We're going to have to go in, and basically vacate all of the pus from these two things. It's an ingrown hair, it's no problem, no problem."
So I went into surgery, my first general anesthesia ever in my life. Totally freaked out and scared, because, you know, I'd never been knocked out before. But I go in, and I don't know, it was kind of dickish actually, because I thought he was kind of incompetent. I went in for this general anesthesia and he was supposed to take out both of them, and then when I came to, he tells me "Oh, we only did one, because we couldn't turn you".
So yeah, right after when I came out and was talking to him, he was like "oh, we didn't find the hair". And I was like "well then obviously it wasn't an ingrown hair". So then after that, I had another one that developed in my groin area, like right underneath the flap of my belly. Because I'm a big dude, right? At that time, I was an even bigger dude, I was like more than pleasantly plump. I was like overflowing in that area! And so like, basically, I kind of got one right there, right above my genitals.
It started as a little small thing, and I was like, well I've had things like that before, so I had learned basically to not get too aggressive with it, but wait for the right time and then, you know, take care of it. But it wouldn't stop producing pus, and I guess it had gotten infected - we'll find out what it was in just a minute.
So I go to this other clinic in Montauban, and I talk to this doctor - who's name I'm not going to say - but this was like the worst doctor I have ever met in my entire life. I mean he was just mean to me. Basically he says the whole reason was I was just fat. He didn't say anything about what it was, he just said it was just a boil. And it was really big, it was probably about the size of a...
Laura: Tennis ball.
Jason: A little bit, yeah, but it was oblong shaped as well. It was probably like a small teacup. So he went in and just aggressively cut the whole thing out, right? So I basically had something that you could fit almost your fist in, right in that fold area, you know. It was really a quite aggressive cut-out actually, that he took. He said he just took everything out, because he didn't really know what it was.
But yeah, that guy was really kind of mean about it, and you know, he tried to sell me on the stomach stapling. He said I was morbidly obese and if I didn't do something about it right away I was going to die. And then he started telling me how he was like this - he was basically selling me these stomach stapling surgeries, and he had this new special device, and basically they leave a hole in you, and you can tighten it and loosen it. It's got like a little knob.
He was trying to sell me on this stuff, and I'm like "no thanks, not interested, whatever". And then, as a funny aside to that story though, after another situation that doesn't really have anything to do with Verneuil's specifically - because I went in for another surgery, and we found out that I might be very, very sensitive to certain types of food. When I cut those out, I lost 60Kg very quickly. So then I had saggy skin.
And then when I went back for a totally different problem - and I was then, at that point, thinner than him. Before I was morbidly obese, and now I was thinner than this guy, and the only thing he could say to me was, "well, you probably have a lot of saggy skin". I was like, "you bastard! For sure."
So then, after that situation, what I ended up having was - well it's round-aboutly connected. I had, I guess, the gastroenterologist called it sigmoiditis, right? I just had some sort of random swelling of the colon. He didn't know what it was, he went in with a colonoscopy, and said "there's nothing wrong, I don't know why you have this problem." I was in the hospital for like 10 days from the sigmoiditis.
Laura: This is where we should really talk about the fistula problem.
Jason: I'm getting to that fistula problem. This is the lead up to the fistula.
Laura: Yeah.
Jason: So I had this sigmoiditis, so I was horribly inflamed. I'm in like serious, serious, horrible, horrible pain; I was like death-bed confessional. And then they carted me off, they sort of debated whether or not they should even call the ambulance, but I was like "no, I can ride". So we get to this hospital, and the doctor is like "we have to cut your colon out, because it's all 'tarded and we don't know what's wrong."
And so we're like "no, no, no, is there any other option?" He said we can try some antibiotics. So for 10 days I was in the hospital on intravenous antibiotics, and I got better, and that's the point where we kind of learned that - well, what he had said to us basically is, while I was in there taking the antibiotics, he says "okay now, now that we've reduced the inflammation, you have to get a colonoscopy, so leading up to this colonoscopy, you need to eat a non-residue diet."
And we were like "doctor, what's that?" And he's like "oh, it means you don't eat vegetables and stuff like that, you just eat meat and things to clean out your colon a little bit." And so we were like "oh, that might be a good idea."
And as soon as I started that, I even got better, so quickly actually that I didn't have to stay in very long. But after I had the sigmoiditis, I guess the situation was that my colon was very weak or something like this, and I formed like a perianal fistula, right? And so I had this fistula, and it was leaking, so I go back to the same clinic, to the doctor. So this is doctor number 2, it's the guy's partner who is the mean guy, right? The other guy was mean, and this guy was just basically - I'm not going to say the name on air.
Anyways, I go back to this guy, and I say, "My butt is leaking pus". Well, I mean, that's pretty much what I said, especially because my French is not so great, so I had to be really direct about it. So he's like "okay". So he has me drop my drawers and he's all up in there with this stick and stuff.
And so he's like "I see that it's producing pus, but I don't know why". And I said "well I have to do to Austria", because I was going on business to Austria, and he's like "Well you're fine to go." So I go to Austria and I get, basically, a giant abscess at the end of this fistula that is basically connected to my booty. So I end up into quite possibly one of the most expensive and worst clinics in Austria, which was just - the doctor there was great, Dr Deckstein?
He was totally awesome. He was like a cool, smooth customer, you know. He was kind of a dandy, he always wore this really nice suit and vest and stuff, but he was such a nice guy and he really did seem concerned. And what happened is that I had gotten this abscess, and it was getting worse, getting worse. And I had gone to the pharmacy there and I'd asked them for a topical analgesic, and they wouldn't sell it to me. And I was like, even in France - in France, you can go in and get some kind of topical analgesic, but they wouldn't give me anything at all.
So there I was with this huge abscess on my butt, and I couldn't sit, I couldn't walk, couldn't do anything. It kept getting bigger, and I was soaking in hot water, I was putting Epsom salts in, I was trying anything I could, and it just kept getting bigger, and bigger, and bigger, and I couldn't sleep the entire night. And so I was up for an entire night. So I went to Mike, who I was staying with at the time, my friend in Austria, and I said "We got to go to the hospital man."
And so he was like "It's only a couple blocks away, you want to walk?" And I said yes. It was a bad idea because about half way there I was just like, wow, this is not going to happen. So there I am in this Austrian - what was the name of it, Krankenhaus. I can't remember the name of it, but they call it the krankenhaus in Austria. And so I get there, and they're just running me around. So for like four hours, I'm basically walking from department to department to department in this place.
Finally I get into see the proctologist, and it was a chick. Now I know this has nothing to do with like, women can't be doctors, or anything like that. It's like, if you're a dude, the last person you want to be looking into your junk and your butt is a chick. And she was, you know, at the time she was a young chick as well. So I mean, so I was like "what's this all about?"
So she had me drop my drawers, so I'm like, you know, I'm in so much pain, I don't care. When you have a disease like this, shame goes right out the window. I have no more shame, I've been spread open, flipped around, twisted, and had like five - I had student nurses come in to watch my wound dressing, with my legs up in stirrups and stuff. I mean it's just gone out the door.
So she does the worst thing any doctor could ever do, right? She has me drop my drawers and she has me lay down, and she goes and she lifts my butt cheek, and she goes "oh!", and jumps back like 3 feet, and she's like "you need surgery now!" (laughing). And I'm like "damn it man! No!"
So then she's like "you have to have the surgery, and you have to sign this waiver." And I look at the waiver, and it says "oh it's just that there's a high probability that you'll never be able to control your sphincter again". And I was like "oh, what?" But at this point I had managed to get checked in, and so I called Chu and my mom about this, and they were like "no, you can't do it!"
And so they did a whole bunch of research on the surgery within a couple of hours that I was being prepped for the surgery, which she said I had to have. So they had stuck me with I.V.s, they're getting me ready, and all of a sudden they called back and said "No, you can't do this surgery, you'll never be able to shit again!" Or whatever it is, right? (Laughing) That's not exactly what they said, but it's more or less what they said.
Anyway, so basically this is the hospital that you can't escape from, because they all say that you can leave voluntarily, but they guilt trip you: "But we've already put the I.V. in! But you signed the waiver!" And it's like the hotel California of hospitals here.
So finally we get out of this place, we go to this other place, and I get put on another five days' worth of antibiotics for this abscess. And that was like the most horrible experience in any hospital of my entire life, because - it was not for me, because I basically had everything that I needed when it came to that, because I just had this abscess, but the way that the other people were treated. There was this poor old guy, oh dude, the stories that I could tell about what happened in that clinic were just insane.
Niall: How then did you first come across the term Hidradenitis Suppurativa?
Laura: We're getting there.
Juliana: Well this is where we come to France.
Laura: I just want to kick in here that when he went to this hospital I got on the telephone and I tried to talk to this doctor. And when the doctor refused to talk to me, his mother, I said "you're not treating my son".
Jason: Oh yeah that's right. And her name, I can't say her name.
Laura: And that's when I found another clinic, and I found that they had a room, and I called my son back and said "you check out of the hospital where you are, you go to this place, they have a room, they're waiting for you, and they are not going to start cutting you to pieces. They will try a less aggressive therapy."
Jason: Well that was his specialty actually, was to find, non-invasive ways to deal with diseases because the surgery as a last resort was his main thing. He was really quite good, and that clinic actually wouldn't be so bad. It was the nurse that made that clinic basically a hell.
Laura: But the thing was, we got him out of there, we got him to the other place, got him under control, so we got him home. And then when we got him home...
Juliana: That's when we found a doctor in Toulouse who said, well - you know, at this point there was a fistula, a fistula is like a tunnel that forms underneath. Imagine a super volcano under your skin, brewing and forming tunnels, well that's kind of what a fistula is.
Laura: Well let me...
Jason: I just realized something. This story is not even over yet! I mean I've never really thought about how long it would take.
Laura: A fistula, when you have a boil, and it's very deep because the agents are kind of like growing into the body, and it doesn't come out through the skin so easily. So what it does is it starts making tunnels, and I've seen pictures of people with these boils on their lower back, like just above the cleft in the buttocks.
Jason: Ass crack.
Laura: And they would have these fistulas that would push, drive their way all the way up into their back, and it's just really a horrible thing when the thing makes the fistula. So what he had at this point was a fistula.
Juliana: And we'll let Dr Guillem talk about it, because it's one of the key things that you don't want to happen. But anyway, just to let Dr Guillem talk, because he's waiting...
Jason: It's about time!
Laura: We're getting there.
Juliana: Just to make it short, we found this surgeon by the time it was an emergency, and he said "hmm, have you looked into Verneuil's disease?" And we're like "what?" And he said "here, come to my computer, I'll show you a picture." And we were like "wow, that could be it".
And so he still performed the surgery, trying to solve the emergency problem, and as soon as we got home we started researching and researching, and that's when we found a very, very good non-profit called Solidarité Verneuil, run by a lady called Hélène Raynal, and she's the one who recommended Dr Guillem, whom we have with us tonight, and maybe it's time we say hello?
Dr Guillem: Hello.
All: Hello!
Juliana: So yes, we found Dr Guillem, and it was a miracle. He not only solved the problem, or performed an excellent surgery, and he'll describe what the difference is between his surgery and the surgeon for fistulas and all that, as opposed to just going to the emergency in the night, having it solved one time and waiting until the next one appears.
Laura: Yeah, the problem is that you keep going from doctor to doctor, and they all have some theory about it, and they apply their basically "cut everything out" solutions. Because they don't know what they're dealing with, I mean they really don't, because it's not widely enough known, it's just not recognized.
Juliana: So doctor, now that we've given a very detailed story and examples, can you tell us in very simple terms for our listeners, what the disease is?
Dr Guillem: Yeah. First of all, I would like to thank you for your invitation. I think we will have later the opportunity to discuss this point, but I can already say that it's really very important to speak out about this disease, by any means possible. An approach like yours is really needed for H.S., and I also would like to acknowledge, for my English, please to just speak slowly, and above all be tolerant.
Juliana: Yes.
Niall: We will.
Dr Guillem: Okay. Hidradenitis Suppurativa is a chronic inflammatory, recurrent, and debilitating disease of the skin. And all these words are important for the diagnosis and the treatment. The disease affects areas of the body where there are apocrine sweat glands. The disease only affects some of the sweat glands, and these sweat glands are located in special areas of the body. The diagnosis is based on three main diagnostic criteria, but there are also accessory diagnostic criteria that can be useful. The three main diagnostic criteria have to be encountered if you want to be certain that the disease is H.S.
That means that in some cases, H.S. can only be suspected, even if in my opinion the doctor should inform the patient of the possibility of the disease. The three main diagnostic criteria are typical lesions, typical localizations, and relapses in chronicity. The typical lesions are deep seated painful nodules under the skin. The other typical lesions are fibrosis, abscess - abscess is the evolution of a nodule because of infection. Other lesions are fistula tracts, that's what you called "tunnels under the skin". Other lesions are fibres and hypertrophic scars.
What is important in this disease is the recurrence and the relapses that always occur somewhere in the same area, or anywhere else in the body. The second criteria is the typical localization, and typically the disease affects armpits and groin. These are the two most prevalent localisations of the disease. Other localisations are perineum, the genital area, breasts, buttocks, nape of neck, the scalp, behind the ears, the pubis, or the fold between buttocks.
Juliana: Alright, so let me just summarise here for a second. There has to be lesions, which can take several forms, such as abscesses, fistulas, some kind of...
Dr Guillem: Nodules, yeah.
Laura: Nodules, yeah.
Juliana: Then the second criteria is that there has to be relapses in the same area, or others.
Dr Guillem: Yes.
Laura: Recurrent.
Juliana: They have to be recurrent. How recurrent do they have to be? Every year, every month?
Dr Guillem: We cannot predict in any way how the disease will relapse. It can relapse in a few days, or it can relapse two years later.
Juliana: Okay. And then the third criteria is that it has to happen in areas where the apocrine glands are, that is the armpits, the groin especially, the perineum, anal/genital area, the back of the neck, behind the ears, under the breasts etc.
Dr Guillem: Yes. There are also other localisations, but that are rarely affected by the disease.
Juliana: Mm hum.
Laura: What are the consequences if it's not recognized and treated? How bad can it get?
Dr Guillem: The first consequence for the patient is the pain. This disease is really painful, and if the diagnosis is delayed, the patient will stay with his pain for years and years. You talked about the Solidarité Verneuil organization, and in this organization, there may be a delay between the first occurrence of the lesions, and the correct diagnosis of H.S. is eight years and up.
Juliana: Oh god!
Laura: So just about everybody who has it goes for at least eight years before they get a correct diagnosis.
Dr Guillem: Yes. If the patient is lucky, he or she will meet a doctor who is aware about the disease. But many patients in fact meet doctors - [Inaudible] There are two problems. The first one is [Inaudible], and the second problem is, if the diagnosis is made, the practitioner doesn't know how to treat correctly the disease.
Laura: Yeah. We went 12 years.
Jason: 12 or 13.
Laura: 13 maybe, yeah.
Juliana: And what is the proper treatment?
Dr Guillem: Oh there are several treatments. But in fact no treatment is yet available to definitively cure the disease. The disease can always relapse, in a few days or in several years. The patients are always exposed to a recurrence of the disease.
Laura: What causes it?
Dr Guillem: The disease affects areas where apocrine sweat glands are numerous, but the main factor is an occlusion of the hair follicle.
Laura: Would you call that hyperkeratenosis?
Dr Guillem: Yes, the hair follicle can be blocked by the hyperkeratenosis.
Laura: That's an overproduction of skin cells, right?
Dr Guillem: Yes. So the small channel from the deep part of the skin to the superficial part of the skin. And in this hair follicle, several glands within the skin, discharge their secretions. And among these glands, there are apocrine glands, but there are also other glands such as sebaceous glands, and in fact, in the disease we mostly see boils developing from apocrine glands, but we also see other cysts from sebaceous glands, for example.
That means that this disease does not only affect apocrine glands, but also other glands around the hair follicle.
Laura: So it could be said that the probable cause is the overproduction of these skin cells, or the keratin, that causes the plug in the hair follicle, into which the different kinds of glands emit their secretions. So the problem is, there's just an overproduction of keratin.
Dr Guillem: Yes. In fact, we don't know whether the first event is the occlusion of the hair follicle, or whether it's inflammation that causes follicular occlusion. What we know is there is an association between follicular occlusion and inflammation, but we don't know which is the first event in the disease.
Laura: When you say inflammation, do you mean inflammation in a general sense, like the inflammation that's associated with arthritis or other autoimmune conditions?
Dr Guillem: Yes, inflammatory diseases.
Laura: So this is like an autoimmune condition?
Dr Guillem: Yes, another inflammatory condition. Of course there is a link between inflammation and immunity, and it is thought that in H.S. there is a defective immunity too. But again, we don't know what is the first event, inflammation, follicular occlusion, inflammation due to defective immunity, we don't know.
Juliana: And if we're talking about inflammation, one of the points you always stress, no pun intended, is stress. Can you tell us a little about the link between H.S. and stress?
Dr Guillem: Yes. Stress, and more globally, psychology, is a known factor. Not only the occurrence of the disease, but also the occurrence of the flare-up that accompanies the disease. In fact it is known that stress, anxiety, or depression can affect the immune system, and therefore it is possible that by modulating anxiety, they can induce both the disease and the flare up.
In the clinic where I work, I propose systematically to the patient to encounter the psychologist at the clinic. And I thought that the disease induces depression for a patient, so I think it was a good idea to suggest to encounter the psychologist, only to stick it out with the disease. And in fact, what the psychologists learned to me is that sometimes, for the first appearance of the disease there is a psychological cause of the disease, such as the death of a member of the family, or the separation of the parents, or separation from his or her spouse, for example.
Laura: So the psychological condition happens first, and then the disease manifests, or the flare up manifests, and that there is a distinct relationship. Is that it?
Dr Guillem: Yes. But in fact, there is a vicious cycle, because in itself the disease can induce stress.
Laura: No kidding!
Dr Guillem: Depression, or sadness. So the patient can fall into this vicious cycle with a flare-up that induces stress, tiredness, and the disease takes advantage from this depression or this tiredness. And your boy is happier now.
Juliana: And on top of that, they go to many doctors, they don't get diagnosed, they get told that it's because of a lack of hygiene, or because they're overweight, and all that must add a lot of stress to them.
Dr Guillem: Yes. The stress is also induced by the fact that the disease is not well recognized by the doctors.
Juliana: How rare is it in your opinion?
Dr Guillem: Sorry?
Juliana: What is the percentage that has...
Dr Guillem: Oh, yes. Several studies found that a global occurrence of 1-4 percent of the population. I think it's not a rare disease. One to four percent is big, It's a big percentage.
Niall: That's an epidemic.
Dr Guillem: Sorry?
Niall: That is an epidemic.
Dr Guillem: Yes. I think everyone knows at least 100 persons around him or her. And I think among these 100 persons, there is one person with H.S. Everybody can understand that.
Niall: Indeed, I mean so many people recognize that if they get a boil or a cyst, or any number of different names, that either they know, or that their doctor told them "this is X" or "this is Y", but in fact they may actually have H.S. underneath that.
Juliana: And many don't talk about it because they're ashamed.
Dr Guillem: Yeah. In fact H.S. is quite often mistaken as common abscesses, boils, or even sexually transmitted diseases, skin infections, or ingrowing hair follicles. And patients, because of the localisations, patients are often shy about talking about the disease.
Laura: Absolutely. It's a terrifying thing. So the thing is, is that my son came to you, and you did a surgery on him.
Dr Guillem: Yes.
Laura: And when I saw the results of the surgery I nearly had a heart attack.
(Laughter)
Jason: It was really impressive, it was.
Laura: It was impressive, yeah.
Dr Guillem: Yes. Because the surgery has to be performed in a large extent - the surgeon has to perform a large incision of a lesion, and if the lesion is already large, the wound will be even larger.
Laura: Yeah, and it takes a long time to heal.
Dr Guillem: Yes of course, a long time to heal. The mean healing duration is about two months, and during this time you have to perform the dressing with the nurses every day.
Juliana: And the hyperbaric chamber helped a lot.
Dr Guillem: Yes. Hyperbaric oxygen therapy is a therapy used for other conditions such as accidents with diving, or intoxication with carbon monoxide, a burn from electric or gas, it is positive for co...
Laura: Codeine?
Dr Guillem: Sorry?
Laura: Codeine?
Jason: Say it in French if you have trouble, it's okay.
Laura: Yeah, say it in French.
Dr Guillem: [French]
Juliana: Oh, so intoxication by carbon monoxide due to a heating system.
Jason: Yeah.
Dr Guillem: Yes. And in fact, the patients are placed in a closed room where the oxygen is provided with high pressure, hence the name hyperbaric. The patient is exposed to this hyperbaric oxygen, and the oxygen pressure in the body favours healing. That means with a delay of two months, for patients will reduce his healing time by about three weeks or one month. It's really important.
Juliana: Yeah.
Dr Guillem: In fact, the main problem is really difficult because you have to have this therapy each day. The session is about two hours long. Maybe Jason can explain how he feels hyperbaric oxygen therapy.
Jason: Let me tell the hyperbaric story?
Laura: Yeah, tell your hyperbaric story.
Jason: Alright. So, I go up to Lyon to get this surgery and meet up with Dr Guillem. He's awesome and everything. He's straight up with me and he says it's going to be pretty heavy, so we're going to schedule you right away after you come out, for these hyperbaric sessions. So there I am, come out of the surgery, and I think it's the very next day I start going to the hyperbaric sessions. It's basically a two hour session, and they take you down to like 1.5 bars - I think it was like the equivalent of 15 metres or something.
Juliana: And it's like a little submarine.
Jason: No (laughing) no, this wasn't even like a little submarine. The one at the Lyon hospital - I mean god bless them, they're really great there, and the people who manage the machine were really awesome, and they were great. But this thing basically looks like a giant propane tank with a tiny little porthole. I mean it's like a propane tank that you can fit, maybe like five people in comfortably, but they'd have put like six or whatever, you know. So it's very compact and contained.
So they have a person sitting in a wheelchair on your left, and two people on your right, and then they have a bed in the centre. And they basically slide you in, because the porthole is so small for you to go in (laughing) that you have to keep your arms in. So for the first two or three days that I was there in Lyon, I went into this thing.
And you go in, and if you're new they often will give you a bottle of water, because what happens is, as the pressure drops - they do take you down very slow in case there's an emergency and they have to bring you back up. They take you down very slow, but as you're going, it's basically like, you know when you drive up or down a mountain or you fly, and your ears pop? Well that happens about every 20 seconds, and some people freak out actually. One person actually started freaking out because their ears wouldn't pop and it got very painful.
And you basically drink this water, or you swallow and it causes your ears to pop, so it's constantly popping. And then basically you're stuck in this tin can for two hours. And you do feel a little bit claustrophobic and trapped, because you know, you can't open the door. Even if there's an emergency, there's all these anti-flame retardant stuff, because it's a high pressure oxygen environment. So anything could theoretically - you're basically inside of a giant oxygen bomb, because if there was a spark anywhere it could really be a dangerous situation.
So that's basically what the hyperbaric chamber there was like.
Juliana: And let me just say here a minute, it sounds painful or tedious or whatever, but we're talking about wounds here that are about - and if you think it's not possible to have wounds like that and not bleed to death, think again. We're talking about wounds that are about an inch or two inches deep, and three or four inches wide.
Laura: And six to eight inches long.
Juliana: Yeah. So depending on how severe the problem is, and how long you have been misdiagnosed, you will have bigger and bigger wounds. And this is why it's so important to try to do something as soon as you get the diagnosis, right doctor?
Dr Guillem: Yes, right. You have the - what are the consequences if a diagnosis is not made? The main consequence is the patient's distress with pain. The other consequence is the extension of the disease, in depth, and in the surface of the pustules, the skin. Therefore the treatment becomes more and more difficult for this.
Laura: And radical.
Dr Guillem: Yeah, and radical, of course. And another consequence of long-standing inflammation in the skin is the possible appearance of a cancer. It's not specific to H.S. It's a mechanism that can occur to every chronic skin wound, and cancer only occurs after 20 years or 30 years of healing. In fact, the H.S. cannot be considered as a pre-cancerous lesion, but you have to treat it correctly, because the only cases of cancer occurring in H.S. occurred because of a long standing disease. That's why it's important to make a good diagnosis, and to offer the patient the good treatment.
Laura: So the sooner you get diagnosed, the sooner you get your surgery done...
Dr Guillem: Surgery is not the sole treatment, and we do not operate on all the patients. The most important thing is to perform the diagnosis, and allow to meet a practitioner who knows the disease. And the practitioner will decide with you, what is the best treatment for you. Surgery is one of the treatments. In fact, the other treatments are not as radical as surgery. They are not as efficient as surgery, but surgery remains an aggressive treatment, and sometimes you need an aggressive treatment for this aggressive disease, but sometimes you don't need surgery.
Juliana: And what are these other treatments?
Dr Guillem: Maybe before talking about the treatments, we can also speak about the other factors that can induce, or favours, both the disease and the flare-up. Because the other treatments can only be clearly understood if you know how the disease occurs and why the disease occurs. Of course, we don't know everything about the disease, we only know the follicular occlusion, and as I said, we don't know why this follicular occlusion occurs, but what we can say is that infection comes after the inflammation.
Because of follicular occlusion, bacteria, which are normally present in the skin and in the gland, can proliferate and induce infection. In fact, infection is responsible for the pain, for the disease severity, but it's not the first event in the disease. The first event is inflammation. And that's the reason why antibiotics are not fully effective. In fact, G.P.s or any doctor unaware of the disease, will probably propose antibiotics to the patient, because the disease looks like an infectious disease. But in fact, antibiotics can only calm the disease, if that's correct English?
Niall: Yep.
Juliana: It can soothe the symptoms.
Laura: Calm it down.
Dr Guillem: Yes. There are three problems with antibiotics. The first one is the tolerance. There are some side effects with antibiotics - it depends on the antibiotics of course. The second problem is when the antibiotics will be stopped, the disease will still be present, and the inflammation will be still here, latent in the skin. And the antibiotics withdrawal will induce a recurrence of the disease. We don't know when the disease will reoccur, but it will likely recur after antibiotics withdrawal.
The third problem with antibiotics is the theoretical progressive selection of resistant bacteria. And if you try antibiotics, it will kill the sensitive bacteria, but the resistant bacteria will be there again, and the disease, for the next time, the flare up will be induced by the resistant bacteria. So next time you will have to take another antibiotic, more powerful, and again, again, again. And in fact, at the end, some patients describe that antibiotics are not efficient at all, even for other infectious diseases than H.S.
Jason: It's basically like bacterial gladiator training.
Dr Guillem: Pardon?
Juliana: Like a battle between.
Jason: Yeah, I was making a joke...
Niall: It would leave you open to all sorts of other problems and complications.
Jason: Well all it does is select the strongest bacteria to come back and infect you, and when they're the only ones left it can get quite bad.
Niall: It's no solution. Before we continue with solutions, I'd like to ask you, how can you make a definitive diagnosis for H.S.?
Laura: He already went through that.
Dr Guillem: As I said, you have to meet the three main diagnostic criteria. That is the typical lesions, the typical localisations, and the relapses and chronicity. There are other diagnostic criteria, such as familial history of H.S., smoking, and for women, hormonal interference, the boils get worse during pregnancy or period for example. That's the other diagnostic criteria.
But in fact sometimes we cannot be sure that we are dealing with H.S. For example, I remember a man with 23 years old, about, had an abscess in the armpit. It was only one lesion, the lesion flared up for three days, it looks typically like an H.S. lesion, but I could not be sure that it was H.S. I just mentioned it, and asked the patient to keep this diagnostic in mind, but we cannot get a certain diagnosis. Sometimes it's difficult.
Niall: Okay, now before the condition gets so bad that somebody's going to be considering surgery, what can be done in the mean time?
Dr Guillem: Other treatments depends on what you want to treat. Maybe you want to treat the flare-up, or you want to give a patient a long-term treatment. The objectives are not the same. Treatment of a flare up is to relieve the pain, treatment of a long-term treatment is to prevent flare-ups. In fact, these two objectives are sometimes contradictory.
The best example is for antibiotics. I said that antibiotics are not effective enough in the disease, but in fact antibiotics are usually effective to treat the flare-up. You can obtain resolution of the pain because of resolution of the flare-up. You don't treat the disease, but you treat the consequence of the disease. For this example, antibiotics are given for a few days and the difficulties related to bacterial resistance are not as important as long-term treatment with antibiotics. So, sometimes the two objectives are contradictory.
Besides surgery and antibiotics, the practitioner has to give some advice about lifestyle. One of the points in this case, is smoking. About 70-90 percent of patients with H.S. are smokers. But it's really bigger than what is observed in the general population. So there is a link between tobacco and H.S. In fact, we can only say that, this is an objective finding, the link between smoking and H.S. But in fact we don't know whether smoking is really a cause inducing H.S.
Laura: May I interject something?
(Laughter and groaning)
Dr Guillem: Yes, of course.
Jason: No, don't go after that one, we're not...
Laura: I just want to point out that there are some studies that I read recently where people with rheumatoid arthritis - which is also an autoimmune inflammatory condition, which I have - and the studies say that there is a strong correlation between people who have rheumatoid arthritis and smoking also. However, what they found out was that the people with R.A. smoked because it provided relief, it triggers the increase of acetylcholine receptors on the nerves, and the acetylcholine actually provides pain relief for the patient. So that was just...
Jason: I do have one thing to say on it, right? So it's like, it's a stressful thing, right? It's stressful. And what's a common coping mechanism that people develop for coping with stress? Like most people, they cope with stress, and that is nicotine. So it seems to me so completely correlated, I mean correlational, it's so completely like "duh, of course there would be more smokers because there's more stress" (laughing).
Dr Guillem: Yes.
Jason: I mean that's how I feel about that. So it's like everybody wants to load onto smoking every single disease, like you see this list of diseases that it causes, and it's like "dude, seriously". Everybody wants to jump onto the "smoking is the cause" train, and that's the only reason why I'm a little bit dubious about it, because it sounds kind of like...
Laura: I think there's definitely a correlation, but it could be because the people are kind of self-medicating, you know? They found something that gives them some relief.
Jason: Yeah, I mean it does.
Laura: I know you're not going to like that doctor, but carry on anyway.
(Laughter)
Dr Guillem: Of course as a doctor I cannot recommend smoking, of course. What I said is that there is a correlation - no, there is a link. It is demonstrated that 70-90 percent of patients with H.S. are smokers, that's a fact. You can say that smoking favours H.S., or you can say that H.S. favours smoking. You can also say that H.S. and smoking are favoured by a common element.
Laura: It's possible, yeah. Could be some kind of genetic thing.
Dr Guillem: Yeah. There are also some biological arguments however. There are contradictory results, studies, that suggested that there is an influence of smoking on H.S. severity, but this result has not been demonstrated by other studies. What is known is that smoking usually induces a healing delay.
Jason: That's what they said - can I break in just to tell this little story? Can I tell the story about the smoking?
Dr Guillem: Yeah, of course.
Jason: Okay, so I go to the hyperbaric chamber, okay? And doctor - very nice, lovely people, I mean I love them to death, they were so great, from the whole chain. But they tell me, basically - I'm going and doing my sessions, you know, doing each day two hours in the thing, and at a certain point they stop you, and they measure your wounds to see how it's progressing, because they're also doing studies, I mean hyperbaric medicine is still kind of...
Niall: Experimental.
Jason: It is a little bit experimental, and they're trying to gain more footing and get more respect from other people, and have it evolve as a treatment, and so the doctor wanted to track all of the wound movements. And so at one point, she's like "you have to stop going". They told me I had to stop, I had to slow down my hyperbaric treatments because I was healing too fast, and she was worried that the wound was not going to heal properly, that there was going to be a complication, right? She said slow down, okay?
So after she says this to me - so I'm going slower - and after one of the treatments I was outside smoking a cigarette, and the same person who had just said this to me not 20 minutes ago then says to me "You can't smoke, it completely reverses the effectiveness of the hyperbaric treatment".
(Laughter)
Jason: And I said, "Well hold on a second, either I am this very special, rare case, or maybe somebody has jumped on the anti-smoking train and just wants to say that because it's just the thing to say today". So I don't know about anybody else's experience, but I smoked like a damn chimney through the entire hyperbaric session.
Laura: Not through the session.
Jason: Not through the session (laughing), not inside. I smoked, and they told me I was healing too fast, and I did not have any problem. Chu will tell you, the nurse was like "I don't believe this, incroyable!" She said it was like magical growing, and I had to slow down! So I don't know, again, I'm not saying that smoking in any way helped the situation, but it obviously, in my single case, which is not a scientific experiment, it didn't have any negative effect. In fact, maybe it actually had a positive one, I don't know at all, so I just - like, with a grain of salt.
Because everybody jumps on the no smoking train, they always do, you know? It's like "coming into the station, choo-choo, all aboard".
Laura: Except in the EU Parliament and US congress, they're allowed to smoke there.
Jason: Yeah, the people who pass the anti-smoking laws smoke in their workplace. I mean what's that all about? I don't know, hey, I'm just saying.
Laura: Anyhow, so the next thing you have to deal with: the causative factors, the lifestyle, the stress, the smoking, yes or no, whether it's correlated or not etc. Now what's the next thing?
Dr Guillem: There are experimental data that suggest that smoking increases sweat secretion, or smoking is a pro-inflammatory agent, or smoking increases follicular occlusion. What is important to say, it is that we lack clear data about smoking and H.S. For example whether smoking can improve H.S. has never been evaluated.
Jason: Right. Somebody needs to do a study, but they're never going to get that study past them, you know, they're really never going to get it.
Laura: Yeah.
Dr Guillem: Apart from smoking and stress there are also other things you have to do with lifestyle with H.S. Overweight is also a classical factor suggested by studies. In fact, as we said about smoking, it is not because someone is overweight that they will definitely get H.S. But maybe if you are H.S. and if you are overweight, maybe H.S. will be more severe. We don't know why, maybe it is because of a frictional effect, deeper of a fold where the disease is located. But if instance is providing the friction, maybe, is the mechanism by which being overweight influences H.S.
Juliana: So what you're saying is, when there are folds in the skin, it could be warmer and more humid in that area, and the friction can cause more occlusions...
Dr Guillem: Yes.
Laura: Well that's...
Juliana: But there's also very thin people who have...
Laura: Yeah, there's very thin people. And there's a rather famous doctor whose name I cannot pull out of my head right at the moment, but he wrote a book recently. He's in the U.S., and his claim is that, in many instances, obesity itself is a sign of inflammation, it's an inflammatory condition.
Dr Guillem: Yes, of course. Maybe it's the mechanism by which being overweight favours H.S. There is also a recent study that evaluated the link between H.S. and metabolic syndrome. Metabolic syndrome is a disease where the patient has several pathological conditions, such as high blood pressure, obesity, abnormalities in the blood lipids, cholesterol or triglycerides, and diabetes also. And in this study, about 80 patients I remember with H.S., there was an increase in the prevalence of metabolic syndrome when compared to 100 healthy subjects. So maybe being overweight induces because of metabolic conditions.
Laura: So is it only kind of psychological prevention that you treat it with?
Dr Guillem: Yes.
Laura: So you deal with the psychology, the stress, the weight and all that, and that prevents flare-ups?
Dr Guillem: Yes I think so. What we can say about H.S. is that several studies evaluated quality of life during H.S. There are some collective studies, and these studies reported what the patients felt about the disease. The main complaints from the patients are pain, flow and discharge from operation, and the skin appearance. And in this field, in fact, this has a daily medical and social impact. Very important. H.S. impacts every field of the life: professional life, affective love life, familial life, leisure, all these fields are impacted by H.S. So I think the psychological effects of the disease are really important. But that's why I tell you about the vicious cycle between psychological problems and H.S. It's really important to take into account this part of the disease.
Juliana: Yeah, extremely important, and we just got a message from Clotilde Harvent. She works for a non-profit association in Belgium and works very, very closely with the other non-profit we mentioned earlier, Solidarite Verneuil. It's very, very active. They're trying to help a lot of people. And she writes:
"Hi everybody, I'm writing to you from la Maladie de Verneuil de Belgique, or H.S. in Belgium. Like in the USA, like in every other country, hidradenitis suppurativa poisons the lives of tens of thousands of patients. I would like to convey a message to patients: We must stop hiding. We do not have to be ashamed. Our pain is not divine punishment for acts that we didn't commit. We must think of our children with that possibility that one day they too will live the hell we're living. We must raise our heads and beat it all together across Europe.That was from Belgium, Clotilde Harvent.
We know there are specialists interest in H.S., and they need us to understand. Even if it seems a challenge every day, when we're exhausted from fighting our own pain, even if sometimes we doubt and need rest, everyone, each in his or her own way can share this basic information with their neighbours, colleagues and friends. Never forget that should they know at least a hundred people, and therefore at least one patient with H.S. Nothing must stop this fight, neither the language, nor the distance, nor the cultural, social and religious differences.
I'm thinking also about those professionals who do their best to help their patients. Most of them feel helpless, and I hope that, like us, they will not give up, even if the results are not fast. We must help them. In their turn, they can help us and future generations. Good luck to everyone."
Dr Guillem: Thank you Clotilde.
Laura: Wasn't there... I think that Chu mentioned at some point that there are quite a number of people who end up committing suicide from this condition.
Juliana: Yeah.
Dr Guillem: Yeah, yeah that's right. And in fact, it's very difficult to recognize those patients who will suffer enough to suicide. It's very difficult to understand why this person did not call anybody to say he or she needs help. It's very difficult for a practitioner to understand why the patient remains alone with that.
Laura: Yeah.
Juliana: Well speaking of not remaining alone, let me just say that we posted on our chat room for those who are there, or who are listening. There are several non-profits trying to help patients. You can call them, you can get advice, they can recommend doctors to you. One of them is ASBL Belgique, or Belgium. See the Facebook link on our chat room.
The other one is an Italian association, and there's an English one, and of course the French one Solidarité Verneuil. So you'll see all the links in the chat room. Do not hesitate to contact them if you think that this is what you're suffering from.
Dr Guillem: There are also organizations in Spain and Germany. In fact I think quite every country around the world. We need to identify such organizations to do something all together.
Laura: I think so, and I think that's one of the things that we're trying to do, we're trying to get the information out in as many languages as we can.
Jason: Well there's actually a number of people who have come to our forum specifically for that information that we put on there, and have written us about it and talked to us about it. So that's one of the reasons why we're doing the show.
Laura: Yeah, we're really surprised at the number of people who have responded to this, and have revealed - some of them privately, they send me emails and say "I have this disease, and I am so thankful that I now know what it is". And they go to their doctors, and whether they get the help they need, I don't know.
Dr Guillem: I think that the patients encounter several difficulties because of the disease, and one of the difficulties is that the disease is not known also by everyone. If you have high blood pressure, if you have diabetes, if you have cancer, you can say it and the person will understand what you are talking about. But if you talk about H.S., or even if you talk about recurrent abscesses, the person will not understand what you are talking about. It's a real difficulty for the patient.
And the organizations such as those in France or Belgium are really important, because the patients can call these organizations, and they will find people who know the disease, who share those same problem, and it's really important for the patient to understand that they are not alone with it.
Juliana: Absolutely.
Jason: Yeah. Well on the topic of, you know, I was saying that it's difficult to talk to somebody about it. I mean you don't. That's really not something of a general rule that you talk to people about. It's not like you're sitting over dinner and the person's like "Yeah, turns out I have diabetes and I have to use this pump", and you're like "Yeah, turns out I get giant pus-filled boils on my balls."
You know, it's not really a topic of dinner conversation (laughing), right? So it really is one of those situations where you can't communicate. And as Dr Guillem pointed out, as a medical practitioner, he doesn't understand why somebody with this disease would not reach out for help. But it's a little bit more complicated than just the disease. So you kind of imagine that the person who has this, very often will have other problems, like you were saying. Like say for instance obesity. So this person might be obese, and he might have a lot of social problems because of that, because in my opinion, obesity is a medical problem. It is not a willpower problem and it's not even a caloric problem. I don't believe that kind of crap.
Juliana: It's inflammation.
Jason: Inflammatory or something else, or it has some factors, because I don't believe it's just "oh, you ate too many doughnuts". I don't buy the "you ate too many doughnuts" theory of overweight. But when you are overweight, there are a lot of social problems that you have with people. There's a lot of things like the way people treat you, how you feel about yourself, the opinions of everyone in society, so that can contribute to depression as well, which probably also inflames the disease more, I think than skin folds.
But I can understand why somebody who has those types of problems would commit suicide. I mean it really is actually a very depressing and painful situation. Because when you have them, they are very painful in a kind of an interesting way. You really do find it very difficult to move, and walk, and sit, but the pain is not so much that you would want to kill yourself. So I don't think that's what it is. I think it's like a constellation of problems that that person manifests in their life, from obesity and H.S. and all this different stuff.
Because when you have this sort of, you know, giant red thing two inches from your penis, you're not going to be able to have any kind of sex life with somebody. So of course, that could mean you don't want to have relationships, and you're kind of afraid of having any kind of intimate contact with people because of those types of things. You never know when they're going to show up. You don't want to have to talk about it. So you can end up isolating yourself from intimate contact. And that just sort of starts to spiral out of control.
So I can understand why somebody would do that.
Laura: Yeah, it's a horrible thing, and I'm just so thankful that there have not been any other flare-ups since...
Jason: Yeah.
Laura: Well, since you probably removed all of the glands, there's nothing left to flare up.
Jason: (Laughing) Yeah, he cut me up pretty good.
Dr Guillem: I would like to say that the disease can really induce patients' withdrawal. Social withdrawal, emotional withdrawal, [-audio problems-] - The patient, and the family, together with the patient. I think it's important to speak to the patients, but also to speak to the family members to explain the disease. The patients usually also have difficulties in explaining the disease to the spouse, or to the mother, as Jason explained at the start of the talk. It's really important to prevent patient withdrawal.
Laura: Yeah.
Jason: Yeah.
Niall: We have a question from a listener here, who is wondering to what extent diet can influence H.S.
Dr Guillem: To what extent?
Niall: The listener wants to know can diet improve H.S., or indeed does it worsen it, depending on what you eat?
Dr Guillem: In fact, we don't have any scientific studies about that. There are some patients' improvements of the disease with some diets, but we don't have any scientific data about that. Patients report improvement with gluten-free diet, for example. I have some patients with this kind of diet, who reported improvement. But in fact, we don't know if it's an effect of the patient being now managed correctly by practitioners who know the disease, or whether the disease really improves because of the diet.
The disease occurs because of several mechanisms, and you can see easily that psychological conditions will also influence the way to eat, the diet that you will have. There is also a modification induced by smoking, or by the image the patient has about him or herself.
Juliana: Well it would make sense, because there's many, many people who report having a reduction in inflammation when they stop eating gluten or casein - milk protein.
Laura: Sugar, too.
Juliana: And sugar. So if it's the cause is inflammation, it makes perfect sense that, for some people at least...
Jason: Even on the Wikipedia page, they do say that people report - again, I don't think there's any scientific studies, like Dr Guillem said, but people report that there is some help from low carbohydrate diets - because that's what we're talking about here, basically. I mean, if you're going to cut out gluten, you're essentially cutting out a very large source of carbohydrates, which is essentially sugar anyway.
My personal opinion is that no, diet does not have a significant effect on it, because I just don't think that it has enough. I think that it can help you manage some stress, it can help you with the obesity problem, and those do help ameliorate it, but skinny people get it too. I think the thing that helps me the most, besides me having the surgery and talking with Guillem, and all the great experience from meeting him, and all the aftercare - because there were a lot of people in from the Solidarité Verneuil, and all of those people, meeting them, realising you're not alone, and having people understand. That actually helped a lot.
But another thing that helped a lot was just a little bit of deep breathing and meditation to kind of manage stress, and being a little bit more open and talking about problems, not letting things sit and fester, basically. I think that those things actually helped me a whole lot more than specifically a diet, for Verneuils, that's the only thing I have to say, in that specific instance, I felt probably helped a little bit more than anything else.
Laura: So you're saying that the psychological approach was more helpful than, say, diet?
Jason: Oh, a hundred times more. I really feel that it was the psychological approach that had more to do with getting a handle on it than the diet did. Because at the time, I was doing a bit of a diet experiment, and I did not see the benefit that I thought I would, so I think that the psychological aspect is very, very important.
Dr Guillem: Okay. In the hospital where I work, we began a few months ago a systematic study about diet. Every patient who comes through the clinic is proposed to encounter a dietician. The first results we observed is that there are often too many calories in the diet of a patient. This first result is not scientific, and rather an impression of a real result. The study is ongoing...
Jason: Well on that topic, just to say, there's a great book. It's kind of academic, I can't remember the name of it, I think it's Big Fat Liars. No, not that one.
Laura: Good Calories, Bad Calories?
Jason: It might be Good Calories, Bad Calories. And he basically goes through all of the different obesity theories, and he talks about the calorie theory, which gives you this kind of formula which is 'calories in, calories out'. And he kind of goes through, and he pretty much lambastes the entire philosophy of the 'calories in, calories out' idea. And he does show you that, if you follow their model, that basically - I mean, if you eat an additional 50 calories a day, 20 years down the road you should be 50 pounds overweight or something.
So he kind of points out that that is a very outmoded idea about it, and that there are other theories than the calories one. So I would suggest that you might want to look at deviating away from the calories aspect, and maybe even wonder about the types of food that people are eating, and also the quality of that food, as maybe having some kind of effect. Because it's not simply a number of calories that you're taking, but what kind of food are the calories actually from? And whether or not that person should really be having that type.
I mean, some people do perfectly fine on a very high carbohydrate diet, and some people don't. Some people get more fat, less fat, whatever. And so this book actually goes through and talks about it, and he quotes lots and lots of scientific papers, and all the different research on it, and he looks at it from every angle. He takes a stand back and he just says, "this is what these people say", and then he says, "but that really can't be the case".
And at the end, of course, you get the feeling that basically, no one really knows.
Laura: Let me give an example.
Dr Guillem: In my opinion, the only constant finding in H.S. is that nothing is constant.
(Laughter)
Laura: Absolutely!
Dr Guillem: Yeah, absolutely. And in fact, the disease occurs because of several factors, and in one patient, one factor will be pregnant, while in another it will be another. And that's why I feel it's important to offer the patient a global approach for the treatment. Surgery, psychology, also dietician, an oncologistfor smoking, patient organisations of course. And I usually tell the patient that in the clinic, the clinic offers a toolbox, and the patient has to take from the box what he feels to need.
Jason: Yeah. I remember, because I was - it was great. And the really great thing, of course, is also the Solidarité Verneuil, and the various different support services that the clinic that you're at provided, which really made everything so much better.
Juliana: Yeah, that's what's sad, is that you're kind of unique, Doctor Guillem, in that sense. Not many people have access to so much treatment and care.
Dr Guillem: I didn't understand, sorry.
Juliana: I said it's sad that there aren't many doctors who take the same approach to treat a patient from the psychological, physical aspects, and you know, take care of them from the first consultation to when they're really doing better.
Dr Guillem: Yeah. Yes, it's really sad. The disease is not well known because the disease is not well...
Juliana: Taught?
Dr Guillem: Yes, taught.
Laura: And people don't talk about it.
Dr Guillem: Not really. In fact, when I ask my colleagues about it, they are unsure of information, they do not remember about H.S. during their training. Personally, I remember that the teacher, the pathologist, speaking about H.S. I think it took about two or three minutes to speak about this disease. But it's because there are a lot of diseases to speak about for students in medicine. I think H.S. has to be taught in post-graduate training.
Laura: If you could say anything to all the people who suffer from H.S., what would you say?
Dr Guillem: They have to find the practitioners who know the disease. I think it's the most important thing, and I think patient organisations have a lot to do with that, because the main result that they can obtain is that they can address the patients for the good practitioners. A patient with H.S. has to be diagnosed correctly with the disease, and has to be followed by a practitioner.
If he has to be treated, then he has to be followed by someone who knows the disease.
Juliana: And you're going to write a book about all this, right?
Dr Guillem: Not really. We have many objectives with Solidarité Verneuil; we have many ideas. We would like to record the disease. There is already a book about H.S., which has been written by three specialists, experts, on the disease, but the book is the only one. It is as unknown as the disease.
Juliana: We'll try to promote it.
Jason: Yeah.
Dr Guillem: Yes! There are many things to do, to speak up about the disease. I think the other take-home message is that patients have to speak up about this disease again, again, and again.
Juliana: Yeah. Start a blog.
Jason: Yeah. Squeaky wheel gets the grease.
Niall: Doctor Guillem, it's been a pleasure to speak to you this evening.
Dr Guillem: Oh thank you very much, it was a great pleasure for me too.
Jason: Well it was great to talk to you again.
Niall: Good. Thank you for coming on, and thank you so much for all the work you've done. Not just for Jason but for hundreds, if not thousands of people. We actually have a thread on our forum online that people can go to. We're going to provide some of the resources they can access in their own country, and continue to collect as much information as we can about this.
Juliana: And this interview will be translated into French so that you can share it as well with the other non-profits, and I'm sure they'll do their job translating it.
Dr Guillem: Okay, thank you very much.
Juliana: Thank you doctor.
Laura: Thank you so much for being with us tonight.
Jason: You have a good night, take care.
Niall: Bye bye. Okay folks, that wraps it up for another week. We're going to be back, same time, same place, next week. Until then, take care.
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