Question 1

Under which names is this disease known, and what are the abbreviations?

Accepted Answer

Acne inversa or the abbreviation Ai is often used, especially in German-speaking countries. Internationally or in medical literature, the term Hidradenitis suppurativa or HS for short is often used. The combination AI/AS or HS/AI is also often used.Another term is Morbus Verneuil. The name originates from Aristide Auguste Stanislas Verneuil, a French surgeon who described the disease as early as 1854.

Question 2

Who can make a diagnosis and why?

Accepted Answer

The diagnosis of Hidradenitis suppurativa is usually made by experienced dermatologists, as this chronic inflammatory skin disease requires specific expertise.Why shouldn't you wait? The earlier the diagnosis is made; the sooner appropriate treatment can begin to control the disease and avoid more serious consequences. Early diagnosis helps to slow the progression of the disease and improve quality of life. In the early stages, treatment can often be more effective and there is a greater chance of getting your symptoms under control. If you wait too long, the inflammation can spread and fistulas and scars can form, making treatment more complicated.The diagnosis itself is an important step. It provides clarity about your condition and allows you to develop a customized treatment plan together with your doctor. Without an accurate diagnosis, there is a risk that the illness will not be properly recognised and treated, which can worsen not only your physical health but also your psychological distress.My advice: At the first signs that seem unusual to you, consult a dermatologist. The earlier you act, the better you can control your disease and its effects. The right diagnosis is the key to dealing with it - not as a victim of the disease, but as an active participant.

Question 3

How do I recognise if I have Hidradenitis suppurativa or what are the most common symptoms?

Accepted Answer

If you notice recurring, painful lumps or abscesses, especially in areas such as the armpits, groin or genital region, do not hesitate to seek medical help. Those affected often initially think it's just a simple pimple or boil, but if these inflammations don't heal, even get worse or keep coming back, it's important to take a closer look.

Question 4

Is Hidradenitis suppurativa Curable?

Accepted Answer

No, unfortunately, our disease is not curable to this day (as of January 2025).However, there are many ways and possibilities to alleviate your disease progression, improve your Hurley stage, and perhaps even bring your AIHS into remission.

Question 5

Is Hidradenitis suppurativa contagious?

Accepted Answer

Don’t worry, I can reassure you: Hidradenitis suppurativa is not contagious! You can hug your loved ones, sit close to them, or share everyday activities without any concerns. There is absolutely no risk of transmitting the disease through physical contact, sharing towels, or even through intimate interactions.HI is caused by a misregulation within the body, specifically in the hair follicles and immune system. It has nothing to do with viruses, bacteria, or other infectious agents. The inflammations, often appearing as abscesses or fistulas, are purely “self-made,” so to speak – meaning they originate within the body and are not transmitted from external sources. To this day (as of January 2025), there is no evidence that HI can be passed on to others.The most important thing: Stay open about your condition. HI can be difficult for others to understand, but with a little explanation, you can help dispel any uncertainties in your environment.

Question 6

Can I pass on Hidradenitis suppurativa?

Accepted Answer

This is one of the most frequently asked questions, and it’s absolutely valid. The answer is: Yes, there is evidence that Hidradenitis suppurativa – hidradenitis suppurativa has a genetic component. Studies show that about one-third of those affected have a family history, meaning they have relatives who also suffer from HI. However, this does not mean the disease is guaranteed to be passed on if someone in the family is affected.The predisposition to develop HI may lie in the genes, but whether the disease actually manifests depends on many other factors—such as environmental conditions, hormones, lifestyle, and overall health. It is therefore a combination of genetic predisposition and external influences that contribute to the development of HI.If you’re worried about passing HI on to your children, I completely understand. The question, “What if my child is affected too?” is an emotional and challenging one. But remember: even if there is a genetic predisposition, it doesn’t mean your children will automatically develop the disease. Many factors come into play, and the mere thought of it should not take away your joy for the future.The most important thing is that we understand our condition. With the knowledge we have today (as of January 2025), you can educate those around you and recognize potential signs early. The earlier HI is diagnosed, the better we can manage it—for ourselves as well as for our loved ones.So: Don’t panic! Instead, approach life with a positive attitude and the understanding that your experience and the way you handle the condition can serve as an example for your children and your community.

Question 7

Why does Hidradenitis suppurativa frequently occur in certain areas of the body?

Accepted Answer

This is a very important question that comes up often! HI tends to affect areas such as the armpits, groin, genital and anal regions, or under the breasts. But why exactly in these areas?The answer lies in the characteristics of these regions. These parts of the body are rich in apocrine sweat glands, which play a key role in HI. These glands are located near the hair follicles, and it’s precisely there that the inflammation occurs. Additionally, in these zones, the skin often rubs against itself, folds, or is subjected to pressure and friction from clothing. This creates an environment that promotes the development of inflammation.Moreover, these regions are often warmer and more humid than other areas of the body - a perfect “climate” that bacteria thrive in, further fueling inflammatory processes. All these factors combined make areas like the armpits, groin, and similar regions the primary “targets” of HI.Of course, for those of us affected, these areas can be particularly challenging because they are so sensitive and central to our daily lives. But here’s the good news: with the right wound care, well-fitted, breathable clothing, and a tailored treatment plan, we can reduce this burden. It may be a challenge, but there are ways to manage it.So: Don’t let it discourage you, even if these regions present particular challenges. We are strong - and with the right knowledge and support, we can overcome these hurdles!

Question 8

Is Hidradenitis suppurativa an autoimmune disease?

Accepted Answer

Our condition is recognized as an autoimmune disease in some countries, while in others, such as Germany (as of January 2025), it does not fall under this category. In Austria, however, it is officially classified as such. But what does this mean, and why are there differences?Hidradenitis suppurativa is not a classic autoimmune disease. Rather, it is classified as an autoinflammatory disease, meaning it primarily results from a dysregulation of the innate immune system. However, the disease does exhibit autoimmune components, which makes its classification challenging. These medical nuances lead to varying definitions depending on the country and medical approach.When thinking about Hidradenitis suppurativa, you should consider it a chronic inflammatory skin condition, characterized by painful and recurrent inflammation in the hair follicles. These inflammations frequently occur in the armpits, groin, anal, and genital regions and often lead to fistulas and scarring. In comparison, classical autoimmune diseases are marked by an immune system that mistakenly attacks the body’s own tissue. Both conditions highlight, in different ways, how sensitive and complex our immune system is - and how it influences the balance within our body.An interesting point is that both Hidradenitis Suppurativa and many autoimmune diseases are treated with biologics. These modern medications aim to regulate inflammatory processes and alleviate symptoms. They represent an innovative therapy that directly influences the immune system and can play a crucial role in managing both conditions.The most important thing is to obtain a clear and accurate diagnosis, as only this enables the development of a tailored treatment plan. Regardless of the precise classification, Hidradenitis suppurativa requires careful management that addresses both the physical and psychological aspects to achieve the best possible quality of life.

Question 9

Can Hidradenitis suppurativa regress to a milder stage?

Accepted Answer

This is a fantastic and hopeful question—and the answer is: Yes, it’s possible! But it requires effort, patience, and the right treatment.HI is a chronic condition, but with the appropriate measures, its progression can be slowed or even halted. In some cases, people with HI experience a reduction in symptoms, with less severity—sometimes to the point of reaching a milder stage. But how does this happen?The foundation for this is consistent treatment and an active engagement with the disease. This means: regular visits to experienced dermatologists, personalized wound care, an anti-inflammatory lifestyle, and, if necessary, medical therapies such as antibiotics, biologics, or other supportive measures like psychological support. Alternative approaches, such as dietary changes, traditional Chinese medicine (TCM), naturopathy, or stress management, can also play a role. It’s primarily about calming the immune system and reducing inflammation in the long term.Additionally, there are now innovative treatment options like the Laight Therapy, which combines light and radiofrequency technologies. It is particularly used in the earlier stages of the disease to reduce inflammation and regenerate the skin. While it’s not suitable for everyone, it offers a promising option—especially when applied early.It’s important to note that not all patients will experience regression to a milder stage, and there is no guarantee. However, progress often depends on our own actions! With proper care, an open dialogue with specialists, and the determination to be proactive, significant improvements are possible.And even if the condition doesn’t fully “regress,” improvements in quality of life can still be achieved—fewer flare-ups, less pain, and more control over daily life. So: Stay committed, be patient, and trust that there’s always hope!

Question 10

What types of exercise and physical activity are recommended?

Accepted Answer

This is a great question that shows you’re ready to take an active role in your well-being! Exercise and physical activity can indeed be an important part of managing HI provided they are adapted to your current health status, Hurley stage, and any active flare-ups. Best of all, movement can give a huge boost not only to your body but also to your mental health.In general: Physical activity is good for you! It can improve circulation, strengthen the immune system, and even have a positive effect on inflammation. However, there are some things to consider with HI to ensure exercise doesn’t become a burden. Let’s take a closer look.If you’re in a calm stage with no active flare-ups, many options are available. Moderate aerobic activities like walking, cycling, or swimming are ideal. Swimming in clean water (e.g., in the sea or a well-maintained pool) is particularly gentle on your joints and muscles while also soothing your skin.During times when you’re not feeling your best or are experiencing an active flare-up, it’s important to be mindful. In such cases, focus on gentle movements like yoga, Pilates, or light stretching. These exercises can help relieve tension and maintain flexibility—without putting additional strain on affected skin areas. There are even specialized “chair yoga” routines for those who prefer to exercise while seated.Another key aspect is choosing the right clothing. Opt for breathable, loose-fitting sportswear made from cotton or specialized performance materials that minimize friction and moisture. This can help prevent additional irritation to affected areas.You might be wondering: What if I feel pain or uncertainty? Don’t worry—start small! Even a short walk in the fresh air can work wonders. Exercise doesn’t have to be intense to be effective. Listen to your body—you are the best expert on your own needs.For those of you in advanced Hurley stages: Movement is still possible, albeit in adapted forms. Physiotherapists or rehabilitation specialists can guide you through specific exercises that not only improve mobility but also help keep scars and scar tissue supple. Even simple mobilization exercises on a mat or gentle water aerobics can be incredibly beneficial.The most important thing: Exercise should be enjoyable! It doesn’t have to be a marathon—the main thing is finding an activity that brings you joy and makes you feel like you’re doing something good for yourself. Your body will thank you—and so will your mind. So: Put on your sneakers, roll out your mat, or simply step outside into nature. Every movement counts!

Question 11

How do I travel with Hidradenitis suppurativa?

Accepted Answer

Traveling with HI? Absolutely, it’s possible! But like many aspects of life with this condition, it requires some planning and preparation to be well-equipped on the go. After all, you should be able to enjoy your vacation or trip without unnecessary worries. Don’t fret—here are some personal tips that have made traveling much easier for me. Maybe some of them will work for you too!First and foremost: Pack your personal "emergency kit"! For me, this means always having scalpels (just in case), sterile gauze pads, drawing salves, corticosteroid creams, and antibiotics on hand. Yes, it might sound like a mini-pharmacy—but hey, preparation is everything! And when you find yourself relaxing in a beautiful spot, you’ll be grateful that you thought of everything.One of my must-have travel companions is my low-level laser device. It’s worth its weight in gold for me because it helps keep inflammation under control. If you use similar devices, definitely pack them. There’s nothing better than supporting your body as much as possible while you’re away.Next, think about your comfort! Choose your clothing wisely. Loose, breathable outfits are your best friend, especially for long trips. Pack a few extra pairs of cotton underwear—it’s better to have too many than too few. A small tube of your favorite cream or ointment should go in your carry-on because nobody wants to deal with dry or irritated skin on a long flight.If you’re flying or traveling long distances by train or car, make sure to schedule movement breaks. Don’t stay in one position for too long—get up occasionally, stretch a little, and give your body a chance to move. Prolonged sitting? Not ideal for us. Plan enough time for stops if you’re driving.In case of a spontaneous flare-up or emergency, research local medical facilities in advance. Where’s the nearest pharmacy? Are there hospitals or doctors nearby? Knowing this can provide peace of mind, even if you (hopefully) never need it.

Question 12

Can I donate blood with Hidradenitis suppurativa?

Accepted Answer

This is a question frequently debated in forums. However, I believe the real question should not only be whether we can donate blood but whether we should. Speaking for myself, I would not want to pass my blood on to a healthy person - and honestly, I’d also be hesitant to receive blood from someone affected by HS. There are so many unknowns about our condition, particularly regarding the inflammatory processes in our bodies. Until we fully understand why our immune system behaves the way it does, this decision should be carefully considered.Of course, it’s up to everyone to find out if donating blood is permitted in their country. Some places have clear rules about it, while others focus on the donor’s specific health status. My advice: ask, research, and then make an informed decision.Some people may feel diminished or less valuable because they are not allowed to donate blood. Please don’t let this discourage you! This isn’t about your worth as a person—it’s about ensuring the safety of everyone involved. The willingness to help others is what truly matters, and that’s something to be proud of.

Question 13

Can someone with Hidradenitis suppurativa develop Depression?

Accepted Answer

Depression is not uncommon among people with HS, and there are many reasons for this. The disease is not only a physical burden but also one that deeply affects the psyche. When you’re constantly in pain, dealing with open wounds, and facing recurring inflammations, that alone is a massive challenge. On top of that, visible scars and potentially unpleasant odors can lead many people to withdraw socially. You might avoid meeting friends, feel uncomfortable in your own skin, or think that no one truly understands what you’re going through. This sense of isolation can create fertile ground for depressive thoughts.There are additional factors that can contribute to depression. HS is a chronic inflammatory condition, and the realization that the disease is currently incurable can be overwhelming. Many people feel helpless, as if they’ve lost control over their own bodies. The frequent need for medical interventions, repeated surgeries, and wound care can also take a significant emotional toll. Sometimes, it’s the sense of unfairness or the constant fear of new flares that weighs heavily on the mind.The first signs of depression can be subtle. You might notice that you feel down more often, lack motivation, or no longer find joy in things that once mattered to you. Sleep disturbances, persistent fatigue, and difficulty concentrating are also common. Feelings of guilt may arise, perhaps because you believe your condition is a burden on others. In some cases, these feelings can escalate into thoughts of hopelessness or even self-harm.What can you do? The most important step is to seek help. Depression is treatable, and you don’t have to face it alone. Talk to your doctor about your feelings - dermatologists are aware of the psychological impact of HS and can refer you to specialists like psychologists or psychotherapists. Connecting with others who share your experiences, such as in support groups, can also help you realize you’re not alone. Additionally, physical activity, a balanced diet, and mindful stress management can provide valuable support.Please take depressive symptoms seriously. Your mental health is just as important as your physical health, and you deserve to feel understood and supported. The road out of depression might not be easy, but it’s a journey you can take - with the right help and the assurance that there is always hope.

Question 14

What happens if you can’t tolerate a dressing material?

Accepted Answer

Unfortunately, the topic of dressing materials is a tricky one that many of us with Hidradenitis Suppurativa have to deal with. Old scars or scar tissue often react sensitively to adhesive strips. Maybe you’ve experienced this too: as soon as those strips stay on for a while, the affected areas turn bright red, swell up, and become painful. And when it’s time to remove them? Often, the skin comes off right along with the adhesive - definitely not a pleasant experience, I can assure you.For 95% of my surgeries, which were in the intimate, gluteal, or coccyx area, I chose to avoid adhesive strips altogether. Instead, those “sexy” hospital mesh underwear - yes, those breezy netted wonders - did a fantastic job of keeping my dressings securely in place. After 18 years with this condition, I have to say I still haven’t found a plaster or adhesive strip that makes my scars or scar tissue truly "happy."Of course, there are certain areas where you can’t entirely avoid adhesive strips. For example, in the underarms, a dressing often needs to be securely fastened to stay in place. But here’s my tip: if there’s any way to avoid using adhesives, give it a try. Sometimes less glue means less trouble - and your skin will thank you for it.

Question 15

What’s better? Open wound healing or sutured wounds?

Accepted Answer

The decision on whether a wound from surgery for Hidradenitis Suppurativa (HS/AI) should be left to heal openly or be sutured depends on many factors. There’s no universal “right” or “wrong” answer because both methods have their pros and cons. What’s most important is to evaluate the situation individually, as the best approach can vary depending on the severity of the condition, the extent of inflammation, and the affected area.If you’re wondering why some wounds are left to heal openly, it’s often because open wound healing allows for better management of inflammation. Particularly for deep or extensive abscesses, it can be beneficial to let the wound heal from the inside out. This approach makes it easier for pus to drain and reduces the risk of new infections forming. Additionally, open wound healing avoids trapping bacteria or other pathogens inside the wound, which could lead to reinfections. However, open healing does come at a cost: it’s time-consuming and requires consistent wound care. The healing process must be closely monitored, the wound kept clean, and dressings changed frequently – all of which can be painful and emotionally taxing for the patient. On the other hand, there are situations where suturing the wound is the preferred option. You might think, “That sounds like the simpler solution!” And indeed, primary closure has its advantages, including faster healing and less demanding wound care. However, this approach also has its challenges. For instance, if small pockets of inflammation remain after the procedure, suturing the wound can lead to issues. Trapped bacteria or pus could result in new abscesses, and there’s a risk the wound could continue to “work” beneath the skin, causing further complications. Despite this, suturing can be an effective option in specific cases, especially if the area is less prone to movement or strain.Ultimately, the choice depends on what’s most suitable for your specific situation. For example, if the wound is in an area like the armpit or groin, where there’s constant movement, open wound healing is often preferred to avoid placing too much stress on the sutures. Conversely, if the wound is in a less active area, suturing may allow for faster and less burdensome healing. Both approaches have their merits, and the goal is always to determine what will work best for you and your body.It’s natural to feel disappointed if your doctor doesn’t choose the method you had hoped for. But trust that every decision is made with your long-term well-being in mind. Talk openly with your doctor about your concerns, ask questions, and make sure you understand the pros and cons of the proposed method. Being informed about why a specific approach is chosen can help ease your concerns and empower you to feel like an active participant in your healing process.

Question 16

Can I get sepsis (blood poisoning) from abscesses or inflammations?

Accepted Answer

With Hidradenitis suppurativa, there is indeed a risk, albeit rare, that acute, untreated inflammations can lead to sepsis. Sepsis, also known as blood poisoning, is a life-threatening condition that occurs when the body’s immune system overreacts to an infection. Instead of targeting the infection alone, the immune response begins to attack healthy tissues and organs, potentially causing severe damage.In the context, the deep-seated abscesses and fistulas can become potential sources of infection, especially if bacteria enter the bloodstream. The risk increases if inflammations are not treated promptly or if wounds are not kept clean. Delaying medical attention when symptoms worsen can also significantly heighten the risk of developing sepsis.Symptoms of sepsis should never be taken lightly. These can include sudden high fever or abnormally low body temperature, confusion, rapid heartbeat, shortness of breath, and a drop in blood pressure that may cause dizziness or fainting. Other signs include pale, cold, or clammy skin and an overwhelming sense of fatigue or weakness that doesn’t improve with rest.If you notice these symptoms, do not hesitate to seek immediate medical attention. Sepsis is a medical emergency and requires urgent treatment. Call emergency services or go to the nearest hospital immediately. Early detection and treatment are critical to recovery. Treatment typically involves antibiotics, intravenous fluids, and, if necessary, intensive care to prevent organ damage.It’s important to understand that while sepsis is rare, it is a real risk and should not be underestimated. Regular wound care, monitoring your body, and acting quickly when unusual symptoms arise are vital. Your health is too important to leave to chance – stay vigilant and proactive.

Question 17

What kind of underwear is best for Hidradenitis suppurativa?

Accepted Answer

This is a question I can answer with confidence: Stick to 100% cotton underwear! Leave polyester, nylon, or similar materials on the shelf. Why? Simply because cotton is breathable, gentle on the skin, and allows for good air circulation. This is especially important for those of us with HI since underwear shouldn’t press or constrict. Loose and airy—that’s the magic formula to relieve sensitive areas and avoid additional irritation or friction.Another advantage of cotton underwear, particularly white cotton, is that it can be washed at up to 90 degrees Celsius (194°F). This is a real bonus when it comes to effectively killing bacteria and other residues. If there’s any bleeding, white cotton is also easier to clean. This keeps your underwear hygienic and comfortable to wear.My tip: Make sure your clothing feels good and supports you—not constricts you. With 100% cotton, you’re on the safe side, and your skin will thank you!

Question 18

Can I go to a public pool or swim in chlorinated water with Hidradenitis suppurativa?

Accepted Answer

This question is often debated, and I completely understand why. There’s no definitive rule, and ultimately, each person must decide for themselves if it’s right for their skin. I’ll share my experiences and thoughts on this—it might help you make your decision.My doctors have never outright forbidden me from swimming in chlorinated water or public pools, but they often emphasize that such "waters" aren’t necessarily the cleanest places. Sure, chlorine disinfects—that’s well known and can even be beneficial for the skin to some extent. But let’s be honest: In a public pool where hundreds, if not thousands, of people swim, hygiene is often questionable. The sheer number of bacteria present is immense. This can be problematic for those of us with HI. Open wounds or small lesions—common with HI—can serve as entry points for germs. The risk of infections or complications is simply there.Personally, I haven’t been to a public pool in over ten years. It’s a conscious choice, and honestly, I’ve made peace with it. Yes, it’s a compromise with my condition—but one I can live with. Why? Because I’ve found a much better alternative: seawater! After two weeks by the sea, my skin feels rejuvenated. There’s no comparison. Scar tissue relaxes, the skin becomes more supple, and inflammation subsides. It’s night and day.Of course, this doesn’t mean you have to give up on all water activities. Maybe you can access smaller pools or private swimming areas where you feel safer. Or you might decide to skip chlorinated water altogether and plan a seaside vacation instead. At the end of the day, listen to your body and decide what feels right for you. Nobody knows your skin better than you do.My personal tip: If you want to be cautious and have active inflammations or open wounds, it’s best to avoid public pools. It’s simply an unnecessary risk. But if you decide to give it a try, make sure to thoroughly clean and care for your wounds afterward. There’s no universal "right" or "wrong"—there’s only what works for you.

Question 19

Why shouldn’t you wait too long before undergoing a surgical intervention?

Accepted Answer

Let’s be honest: Waiting too long doesn’t help – it just causes more trouble. The longer you hesitate, the greater the risk of deeper and more complex fistulas forming. And who needs that? No one! Constantly or frequently draining abscesses, as unpleasant as it is, unfortunately promotes the development of these fistulas. You want to avoid that, right?I get it – the fear of surgery can be overwhelming. But let me tell you this: Fear is a terrible advisor. It holds you back, blocks you, and makes the problem worse. Instead, imagine how much better you’ll feel when the “broken” part is finally dealt with. My motto: Destroy what destroys you. It might sound a bit radical, but trust me, it works.The sooner you act, the fewer problems you’ll face in the long run. Every day you wait could make the situation worse. So, muster your courage, take that step, and do yourself the favor of addressing the issue. Because afterward? You’ll have one less thing to worry about and can focus on moving forward again.And hey, you’re not alone. Many of us have been through this – and it’s been the right decision. You’ve got this!

Question 20

Is permanent hair removal in the affected areas advisable?

Accepted Answer

Yes, in my opinion, it can make sense! It's one of many ways to help prevent our condition to some extent. Personally, I undergo laser treatment – done by a licensed dermatologist. But let me be completely honest with you: Laser treatment alone hasn’t improved my HS.What really helped was the combination of many things: a significant dietary change, opting for surgical treatment with open wound healing, alternative medicine like TCM (Traditional Chinese Medicine), visits to naturopaths, permanent hair removal, and much more.In short: Laser treatment is one building block that can help, but it doesn’t work on its own. Combined with other approaches, it's a valuable method – which is why I say: Yes, it’s worth it!

Question 21

What is a Low-Level-Laser and why is it used in professional wound management?

Accepted Answer

A Low-Level-Laser – also known as a soft laser – is extremely helpful when it comes to supporting wound healing. Unlike a strong surgical laser, this one doesn’t cut but works gently. Simply put, this laser emits red light directly onto the wound or scar tissue, causing no pain.Why is the laser so commonly used in professional wound management? It’s simple: it has many beneficial properties, especially for open wounds or scar tissue. Among other things, it stimulates the tissue, promotes blood circulation, relieves pain, reduces the risk of infection, and minimizes swelling. This helps the wound heal faster.The laser was recommended to me by doctors and wound care specialists. Based on their advice, I got one for myself. After undergoing many surgical interventions, I was able to compare how wound healing progressed with and without the laser – and for me, the difference was clear. With the laser, healing was noticeably more comfortable and effective.You can find information about Low-Level Lasers on the internet. I got my laser from the company Heltschl Medizintechnik in Austria.

Marcus Ehrhardt

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