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The Skin Condition You’ve Never Heard of But You’ll Never Forget – In-Depth Doctor’s Interview

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Adam Friedman, MD, Chair of Dermatology at the George Washington School of Medicine talks about a painful skin condition called H.S.

Interview conducted by Ivanhoe Broadcast News 2024.

Friedman: The prototype of autoimmune diseases like lupus and the way to think about it is something happens where instead of a dying or dead cell gets trashed and taken out and kicked to the curb, it is processed as a foreign material and your immune system then learns to recognize self as foreign. Whereas autoinflammatory, which is I think what is more hidradenitis suppurativa and a lot of conditions that we take care of inflammation turns on and it can’t shut off.  The immune system can turn on very easily and the feedback mechanisms.

What causes them to do that, that it does not shut itself up like that?

Friedman: That we don’t know. We’re learning a lot more finally about hidradenitis suppurativa. For years it was orphaned in both innovation but also research. Finally, it’s getting to stay in the sun, and there is a lot of research, we know what’s happening in terms of what are the signals that are in excess, and that’s what then leads to new therapies. But why it’s happening, it’s a mix, it’s genetics. Probably environmental factors, which we like to call epigenetics, so nature and nurture play a role. But in terms of, is there one thing that causes the answer is, no.

Do you think it’s more nature than nurture?

Friedman: I think it’s probably more nature in the sense that there is a familial connection. When I have new patients come in, as anyone else in your family, have this. I always preface it by saying, I realize this probably isn’t a conversation you have at the dinner table.

I got something similar later in life and I thought I read where it had to be inherited and I thought either my mother or father had it obviously and didn’t say anything about it.

Friedman: I think genetics plays such a big role in probably every disease, but there’s an external influence. I think the way to consider it is it’s not that the external cause in this setting it’s either if it’s there, you have it. If it’s not there, you don’t. It’s a trigger. If you feel guilty about eating something, those are pron inflammatory stress, not getting enough sleep, smoking, alcohol, those things don’t cause these conditions, but they will aggravate, they’ll make it worse.

As a human being going back to foods that you don’t like, there’s something about them like shade vegetables, I’ve shied away from them, and it says there’s some combinations of blood or whatever in your body where you’re going to react badly to that particular food. But your mind is telling you don’t eat it. Doesn’t sound good to you?

Friedman: I think we often know, in that sense, right and wrong, just because we know doesn’t mean we follow it. I make it very clear to everyone though that just because you eat well, you exercise, you do all the right things, this is not going to go away. Often I find patients are very frustrated because I did everything right and I still have it.

Is it like faith?

Friedman: I think that when we consider a condition like hidradenitis suppurativa, even common conditions like psoriasis, eczema, even rosacea, that when you have this persistent inflammation of the skin, things are not silent, that inflammation is everywhere else. I think about hidradenitis as a systemic condition, meaning throughout the body that we appreciate the skin manifestations, but that chronic inflammation is going to hurt everything.

So you’re saying, what is manifesting on the outside is also impacting the organs on the inside?

Friedman: The skin can be an incredible window in terms of internal health. Hair findings, nail findings, the feel, and the color of skin can give you some insight in terms of other disease states or underlying disease states. That can make us the first point of contact for managing chronic, full-body holistic diseases. Not just, that there’s something on your skin and it’s isolated skin, everything is connected. We must consider these chronic diseases as systemic diseases because we now know that many of them come with extraordinary comorbidity baggage. Hidradenitis suppurativa, for example, 50 percent of people will have inflammatory arthritis, and many will have high blood pressure, diabetes, mental health disorders, and clinical depression. The list is extraordinary.

Which is triggering what?

Friedman: I think it’s both. I think that a great way to think about the signals that are creating these boils in the skin can also cross the blood-brain barrier. They can affect how other organs function and how they turn over. That activity in the skin can be a marker for inflammation throughout the body causing damage not just to the skin but also the body, and that’s why we see those- to your point though, having this disease, the impact, we’re talking about hidradenitis, extraordinarily painful disabling. The disease itself can cause clinical depression. But the impact of that disease can also exacerbate other conditions, but also the coping mechanisms. Self-medication can also affect primary medical conditions as well. It’s not one-to-one, rather it’s more of a gyroscope of intercalating issues.

Is that a boiler maker, no pun intended?

Friedman: You brought up such a big point about a lot of skin conditions waiting for the shoe to drop, and the impact and that concern anxiety does vary from disease to disease. Hidradenitis suppurativa, when is the next flare going to happen? I have so many patients terrified about traveling, and doing things that you and I probably take for granted. What if I sitting on a plane for eight hours, and I get a flare I’m not at home? I don’t have my bandages; I don’t have my medication. There is this burden of disease, especially with skin disease, about waiting for the next flare. Another parallel would be hives, chronic spontaneous urticaria, where, because it comes on so fast in a matter of minutes, those patients live in a constant state of fear that the disease will manifest out and about doing whatever. But I think this is true for a lot of conditions data is showing that patients experiencing a flare are already worrying about their next flare while they’re currently suffering.

Can that aggravate the condition? Is that a treatment or are they doing that themselves to make themselves feel better?

Friedman: I think when we think about the management strategies, and I make it plural because I don’t think there is any one thing and one thing alone that will manage especially moderate to severe hidradenitis. There’s a constellation of things. Bandages may be required. If someone’s having an active flare, they are draining their skin open up, which commonly happens when these boils emerge. There’s a life cycle. You have these painful, whether it be acne-like or pimple-like lesions, boil-like lesions that ultimately will, in their own words, the bust will release all this purulent pussy material that can stain clothing that smells horrifically. Adding to that burden of disease. Having bandages and being familiar with the types of bandages you can use safely is one piece of the management strategy. But then when we think about treatment, it’s going to be ongoing. This is a chronic condition we can’t cure; we can only contain it. But it’s going to be a combination of both topical and systemic medications to gain that control. Then really, first and foremost will be systemic anti-inflammatories, which range from anti-inflammatory antibiotics now more approved but a lot of them use off-label, what are called biologics. Protein-based therapies are almost like sponges, sponging up those excess inflammatory signals that are pre-produced way overboard in hidradenitis to then keep things balanced so you don’t have too much of it. For many years we only had one FDA approved called adalmumab.

How does it know where to target and how does it actually do that? What’s the process?

Friedman: We’re talking about patients who never heard about monocle antibodies or biologics. In essence this is personalized medicine. It is a protein that has been designed to specifically target a component of the immune system that is in excess. Depending on which one it could be targeting, a signal, it will only bind and weed out a particular signal. Or it might target a receptacle, a receiver of that signal, preventing anything from binding to it. These are going to be on the cell surface at the top of the cell to prevent all that horrible magic going on inside the cell that perpetuates that inflammation.

How well does that work, the biologic?

Friedman: It depends on a lot of things, so the target will be a big one, the frequency of dosing. These are all things that are figured out during the clinical trial, program, and approval. But we do know that, depending on the treatment, certain demographic features may influence, so body size and weight. If someone’s been exposed to one of these treatments in the past, the good news is what we’re seeing, especially with some of these newer therapies, it doesn’t matter who, what, where, when, or how they work the same across the spectrum of demographics. But what it comes down to is we just need to use it enough to validate that. Clinical trial programs are supposed to be generalizable, but they’re often small, and they are statistically significant. But it’s the real-world application, often in dermatology, off-label use, really using things not for the intended purpose. That’s one of the most fun things about being a dermatologist. We learned a lot from that and about the disease as well.

When people hear dermatology, I got a pimple, I got to go in and get a patch or whatever, this disease or disorder or whatever, can just be devastating to people who have it.

Friedman: Devastating is an understatement. It is extraordinarily painful, it’s disfiguring and disforming. Given this is a chronic condition, you’ll keep getting these boils repeatedly. Part of the problem here is that inflammation that’s driving what you see at the moment prevents proper wound healing. These patients will develop unique and horrifically disabling scarring that will limit mobility. But once that forms, the only way to get rid of it is surgery. Now, if we can catch these patients early before that seven to 10-year average gap from onset to actual diagnosis, we can prevent this. That is the call to action here is better education and better awareness that this condition is prevalent, that this condition starts often in adolescence, but can start at any point in one’s lifetime. But treating it and mitigating it early can prevent the horrific and disabling sequela that we know will occur if we do not treat it early. That also goes along with other medical problems. Persistent chronic inflammation is bad for everything. Treating early will likely prevent a lot of the other medical problems that run with this condition that we know very well about.

Are you treating an anti-inflammatory? Is that what you’re talking about?

Friedman: Correct.

Is it a viral killer drug? What are you using?

Friedman: I think one of the important things to point out is some of the misperceptions. This is not a contagious disease. And I think one of the problems is because it looks like an infection. When this first starts, you could easily confuse it for an abscess or a furuncle, which is an abscess evolving from a hair follicle. Certainly, a one-off shouldn’t make you automatically assume hidradenitis. However, the recurrence of it, the predilection for body folds under the armpits, under the breasts, in the groin, buttocks. But chest and back certainly can be affected, by family history. Those things would start to make you think about hidradenitis suppurativa.

What you’re giving them is trying to calm down the radiant inflammation caused by the original?

Friedman: Correct. We are trying to put out the flames. We are trying to be the local firefighters to put out the flames of inflammation and keep them down. Now, some inflammation is good and that’s where we think about even toxicology overall. It’s not an ingredient, it’s not a substance, it’s how much. We need inflammation to fight infections, to heal wounds, all those things. Too much of a good thing is a bad thing. That is really at the crux of hidradenitis. It is too much inflammation ongoing that just will destroy everything in its path. We have to quiet that down a bit.

She went to see several doctors as you well know before you finally got the right diagnosis. I guess it’s just so rare, even physicians are not accustomed to seeing it. For people watching this across the country, what would you tell them to do?

Friedman: I think with anything with skin if something doesn’t behave the way you’d expect. In this setting, you get a boil, it should run its course and go away. If it keeps coming back or you’re getting more, that should raise a red flag. Maybe this is not just something simple and see a board-certified dermatologist. As we are very adept at treating this and the 3,000-plus dermatologic conditions that we know about, and there probably are more.

END OF INTERVIEW

This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.

If you would like more information, please contact:

Anne Banner

abanner@gwu.edu

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