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Hidradenitis suppurativa patient experience
My Experience With Hidradenitis Suppurativa: From Misdiagnosis to Disease Control

Released: February 24, 2026

Mark Dixon
Mark Dixon
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Key Takeaways
  • HS is often misdiagnosed, and patients can go a significant amount of time (eg, 8-9 years) before receiving a confirmed diagnosis.
  • Biologic therapies can improve quality of life and bring disease control to patients with HS.

My name is Mark. I am 39 years of age, and I live in Pasadena, California. I have been living with hidradenitis suppurativa (HS) since I was 12 or 13 years of age when the symptoms started. For the first 8-9 years of having HS, it went misdiagnosed. I started with my primary care provider, but I saw lots of different specialists during this time. Understandably, it was often dismissed as teenage acne. I developed flare-ups all across my body—the trunk, back, shoulders, back of the neck, and buttocks. Everywhere you can imagine HS being, that was where I had it. My doctors treated it with antibiotics, topical cream, or a wash solution with little effectiveness. Of more importance, I was told this was just part of being a teenager.

As I aged into my 20s, I realized the acne that I had on my face had cleared up but the rest of the body remained consistently flaring. If anything, it was worsening. This indicated to me that it had to be something else, more than just acne. I again started seeing more doctors, including dermatologists, infectious disease specialists, immunologists, and allergists, trying to figure out what could possibly be causing all these bad flare-ups.

Finally Receiving My Diagnosis
A turning point came after a procedure that I had to address an area of my buttocks that was constantly having flare-ups and causing me a lot of pain and aggravation. Following the procedure, a family friend who was a nurse helped me with wound care by packing the area that I could not reach. During this time, she saw what I was going through and started digging into the issue. After talking to her colleagues, she was the first person to ask me, “Has anybody ever asked you about or mentioned HS?” I responded, “No, never heard of it.” She then gave me a printout from a website that explained what HS was.

What happened next? Well, I started doing tons of research on my own about it. When I dug into HS, I realized that all the research papers and everything I was reading described this condition that aligned with the things I was experiencing. This included large nodules, sinus tracts that were under my skin, and really painful abscess breaks with discharge that was colored, bloody, and/or smelly—the hallmark symptoms of HS. Everything that I dealt with in my life told me that this was not simply acne; it was coming into reality as I was reading different papers and research.

Afterward I found that an author of a paper I read had a clinic in Detroit, which was approximately 90 miles from where I lived at the time. I called his office and made an appointment. When I went to my appointment, he was the first doctor to confirm and diagnose me with HS. That was a pivotal moment in my journey, and I was approximately 23 years of age.

My HS Treatment Journey
This was the first time that it ever made sense to me, as I was able to put a name to something that I had been experiencing for years. It helped inform me about what was going on in my body, and it helped point me in the right direction in terms of treatment. I started to see this doctor pretty regularly. I would go into his clinic approximately once per month. But, at the time, there still were not many therapies available on the market. I think the biologics that are available today had just gone into clinical development for HS.

For the first few years, I was treated with traditional and strong antibiotics either alone or in combination. My doctor used different therapies that were available at the time. Then, when I was in my early 30s, I moved away and had to start seeing a different dermatologist. She was a specialist in HS as well and was the first to recommend a biologic to me. That was another game-changing moment.

At first, I was apprehensive to start a biologic. I did not fully understand what they were nor did I realize just how long these therapies have been used for other conditions. My new dermatologist was good about being patient with me, walking me through the process, getting me all the information I needed to make an informed decision, and helping me think about how to weigh the risks vs rewards. I was initially skeptical because I felt like I had already tried every treatment available and nothing really worked. Some things like acute flare-ups could be managed with steroids and drainage, but for the most part—from a systemic point of view—I just never felt like any of the therapies worked. I was apprehensive and reluctant to think that anything would change.

Sure enough, I started a biologic in 2016 and began to see results within the first few weeks of treatment. I noticed a pretty big difference, seeing my flare-ups were healing or not quite as severe as they once were. I also noticed that I was not developing as many new flare-ups. Before, I would get large, intense flare-ups 2-4 times per week all over my body. Almost immediately after the initial treatment, it became less frequent and, over time, much more manageable. I later noticed that my skin started to heal and the condition calmed down. I started feeling a lot better, too. As I was still dealing with my HS, my quality of life greatly improved because the treatment was managing the severity and frequency of my symptoms and flare-ups.

Since 2016, I have shifted to different, newer treatments a couple of times as they have become available. I still see success with them in varying degrees. I still continue to deal with flare-ups regularly (a few times per year). However, now I can give my dermatologist’s office a call to receive care and continue my life. For the most part, my quality of life has vastly improved from where it was in my early 20s and before the advent of the new therapies that are now available for HS.

Your Thoughts
How often do you prescribe biologics to your patients with HS? You can get involved in the conversation by answering the poll question and posting a comment below.

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How often do you prescribe biologics to your patients with HS?

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