Ask AI
Back Back
HS patient experience
My Journey With HS: What Every HCP Needs to Know About the Patient Experience

Released: July 29, 2026

Mark (Patient)
Mark (Patient)
Activity Information

Activity

Progress
1
Course Completed
Continue
Key Takeaways
  • Patients with early disease onset, especially around puberty, often are misdiagnosed with acne and experience significant delays before finally receiving a confirmed HS diagnosis.
  • The HS Foundation is a valuable resource for patients and can help them find an HS specialist who practices in their area.
  • From the patient perspective, it is imperative that healthcare professionals advocate for their patients with HS—spreading awareness about the disease itself and its treatment options.

I first started having symptoms of hidradenitis suppurativa (HS) when I was about 12 or 13, around the start of puberty. At first, I thought it was just acne. As it got worse and spread, I saw my primary care doctor, who also believed it was typical teenage acne related to puberty.

When I had a bad infection or acute flare-up, my doctor would prescribe antibiotics and a medicated wash. I was also told to use fresh towels after showering, typical advice for bad teenage acne. But despite following all those recommendations, nothing really helped. As I got older, I realized what I was experiencing was different from acne. I knew something else was going on, even though I didn't know what it was.

Putting a Name to What I Was Experiencing
As my symptoms got worse, I started seeing different dermatologists, but no one could tell me what was really going on. I was told it was ingrown hairs, folliculitis, or stubborn acne. The treatments were always the same: antibiotics, creams, medicated washes, and eventually repeated incision and drainage procedures as the flare-ups became deeper and more painful.

I was embarrassed by many of the affected areas, especially those in more private areas, so I didn't always tell my doctors everything. My symptoms continued, and over time the disease became impossible to hide. One flare-up on my buttock was so painful I couldn't even sit to drive to urgent care. It had to be drained, and I was later referred to a general surgeon to remove the infection.

By my early 20s, I knew this wasn't acne anymore. My facial acne had cleared, but the painful flare-ups on my body kept coming. I saw dermatologist after dermatologist, along with infectious disease specialists, searching for answers.

After one surgery, a family friend who was a nurse helped with my wound care. And her compassion led me to do some research. She was the first person to say, “I came across this condition, and it sounds like what you have going on,” and suggested I ask my doctor about it. She then handed me a piece of paper that had an outline and description of HS. When I read the description, I remember thinking, "This is exactly what I've been experiencing."

I brought the information to my dermatologist, but he dismissed it, saying HS was uncommon in men and that I just needed to continue my current treatment. I was on isotretinoin at the time. That visit was incredibly discouraging, but I still felt he was wrong.

So, I did more research and found an HS specialist about 90 minutes from my home. At my first appointment, he diagnosed me within minutes. As he explained the condition, everything finally made sense. For the first time, I had a name for what I had been living with, and that gave me hope that I could finally start the right treatment.

Introducing the Era of Biologics
Unfortunately, there were not many new treatments for HS at the time. This new doctor was 1 of the first to use a combination of antibiotics and hair removal techniques. He tried many different things that were somewhat helpful, but my problem was systemic. I was flaring up regularly, and the underlying condition was not going away.

My doctor gave me a standard protocol for my flare-ups. If they needed surgical intervention, he ensured I received appropriate follow-up care, which made recovery much more manageable. I relied on these treatments for about 8 or 9 years.

Around 2017, after moving and seeing a new dermatologist, I felt there wasn't much more that could be done. During a severe flare-up, someone encouraged me to ask whether there were any new treatment options available. Lo and behold, it was the dawn of biologic therapy. I was nervous at first because I didn't know much about it.

I was initially apprehensive about starting biologic therapy because it affects the immune system. My dermatologist took the time to address my concerns, explain its long-term safety, and share positive patient experiences, giving me the confidence to start adalimumab.

I was able to start adalimumab quickly with insurance and patient assistance support. My dermatologist's office also helped me navigate the insurance and specialty pharmacy process that goes along with biologic therapies, making it much easier to get treatment.

Once I started treatment, it was life changing. I noticed improvement almost right away, and over time I had fewer flare-ups and less severe symptoms when they did occur. Within a few months, I could tell it was working. The results were encouraging, and I stayed on the treatment for many years.

Improving Disease Control and Quality of Life
I eventually moved from Michigan to California, where I had to re-establish care. I wanted someone who truly understood HS, not just the basics. Through the HS Foundation's specialist directory, I found a dermatologist who still cares for me today.

At that point, my HS was fairly well controlled, but I was still having 1 or 2 flare-ups a month. I thought that was probably the best I could expect. During my first visit, my new dermatologist reviewed my entire history, examined me thoroughly, and then said something I'd never heard before: "We can do better." I thought my current status was the best I was going to get. This truly was my second groundbreaking moment from a treatment perspective.

That changed everything. She increased my adalimumab dose because it had become less effective over time, and when I worried about running out of treatment options, she reassured me that new therapies were becoming available. Together, we explored other biologic treatment options, and because I trusted her and had already experienced the benefits of biologic therapy, I felt confident switching to secukinumab and, more recently, to bimekizumab, which I'm still early in my treatment with. Trying a new therapy has helped me gain even better control of my HS and further improve my quality of life.

Your Thoughts
As you have read, my journey with HS started long before the dawn of biologic therapies. I certainly experienced HS to its full capacity and genuinely understand the impact it can have on quality of life. Today, HS is becoming more well known. More doctors are aware of what it is, and I have even seen commercials that have mentioned it by name. It is getting into the mainstream a little, too, as there is more targeted advertising and advocacy happening. As somebody who has had HS for almost 25 years, it is incredible to see this happen. I hope this is a sign of good things to come and a positive trend towards better quality of life and outcomes for people with HS.

For adolescents like I was, whose primary care providers may not recognize HS, early diagnosis and timely treatment can make all the difference. I hope more healthcare professionals recognize the signs early so fewer people have to experience what I did. I still see people who were undiagnosed until maybe a few years ago in my patient advocacy groups, and some of these individuals have had it for 30-40 years. For me, the take-home message is advocacy. That means spreading awareness about this disease and trying to get people on these new therapies that, from my personal experience, can be life-changing.

How often do you use biologic therapies to treat your patients with HS? You can get involved in the conversation by answering the poll question and posting a comment below.

Continue

Poll

1.

How often do you use biologic therapies to treat your patients with HS?

Submit