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My hidradenitis suppurativa journey
Living Without Answers: One Patient’s Journey With Hidradenitis Suppurative

Released: April 20, 2026

Keven Brown (patient)
Keven Brown (patient)
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Key Takeaways

•    HS is often misdiagnosed, and patients can go a significant time before receiving a confirmed diagnosis. 
•    Patients also may need to travel long distances to see an HS specialist, highlighting the need for all dermatologists to better understand and care for patients with this disease.
•    HS-dedicated resources are available for HCPs and patients alike, including the HS Foundation. 


I live with hidradenitis suppurativa (HS), a chronic inflammatory skin disease, and for years, I did not even know that was its name. My journey started in 2005 when I was in my mid-20s. I went from appointment to appointment, receiving injections and leaving with the same questions. Nobody could explain what was happening to me, and looking back, that was one of the hardest parts. I kept telling myself that one day, it would stop; it did not. In the beginning, HS started on my scalp, and then it would come back somewhere else on my body. That is when I noticed the pattern: flare-up, appointment, temporary fix, repeat. I did not even have a primary care doctor. I only saw a dermatologist because I had seen his commercial on TV and thought he must know what he is doing.

When my HS flares moved under my arms, working became an act of endurance. People could see that I was tired and hurting, but they did not know why. I began pulling away from people because I was trying to hold myself together and get through the day. Socially, I went from someone who was always included to someone who was just trying to survive the week.

I saw approximately 16 dermatologists on the East Coast between North Carolina and Florida. Some said almost nothing to me, and others told me that my disease would only get worse. Then there were some who told me that they could not help at all. Only one older dermatologist at least understood that my condition was serious. She warned me that it could affect far more than my skin. But even then, I did not leave her office with a diagnosis or a real treatment roadmap.

By the time I was living in Tampa, my days revolved around symptom management and getting to work on time. In February 2013, I entered a clinical trial and was officially diagnosed with HS. I could barely pronounce “hidradenitis suppurativa” when I first saw the name, but having that name mattered. It meant that I was not imagining the impact I was experiencing and that there must be an answer somewhere.

The Turning Point: Seeing the Right Specialist
The clinical trial mattered because it was the first time that I felt other people understood my condition, but I was still struggling. I kept working, spending money that I did not have on basic supplies, and telling myself to push through. Then one day, I remember thinking, “This just cannot be life.”

When I found an HS specialist in Detroit, I borrowed money from my parents to get on a plane and meet them. After years of great shame and ridicule, I finally heard a message that I needed for a long time. My HS specialist said, "I can help you. I know where you are, and I definitely can help you." When you have lived without answers for so long, those words mean everything.

Afterward, my path got more complicated. I became seriously ill and was hospitalized. I had to leave the life I had built in Florida behind. Because I was so sick, my sister had to pack up my apartment, and my parents took care of me when I came home. Even after I found the right HS specialist, insurance delays further stood between me and the treatment we knew I needed.

Once I finally started a biologic therapy, things began to change quickly. For the first time, I could feel that improvement was possible. And I remember wanting to get in the car to go see my daughter.

What Other People and Doctors Must Know
When I talk to other people with HS now, I try to point them toward the things I did not have in the beginning of my journey: real information, credible resources, and specialists who truly understand this disease. I use resources from the HS Foundation and am a mentor in their HS Buddies program. There is so much noise out there, which is why good guidance matters.

People do not need just any dermatologist but someone with real experience with HS. Once you find that person, you have a real chance at a treatment plan, the necessary documentation for work, help with navigating insurance, and being understood without having to explain every part of yourself. I also tell people not to ignore their mental health. Although HS has clear physical manifestations, the mental toll it takes is real and can flatten you. There is nothing weak about telling your doctor that you are overwhelmed, anxious, depressed, or all the above. That conversation matters.

I wish more doctors understood that when a person with HS comes to you, they are not only experiencing physical symptoms. They are feeling or dealing with fear, exhaustion, disrupted work, strained relationships, and desperate hope that you might be the person who finally knows what to do. If you cannot provide every answer, address that honestly. Do not dismiss the person in front of you.

There was a time when it felt like there was nothing out there for people with HS. Today, there is more awareness, community, advocacy, and possibility. If sharing my story helps one person get to the right specialist sooner or helps one doctor understand what people with HS are truly carrying, then it is worth telling.

Your Thoughts
How often do you consider patient-reported outcomes when developing treatment plans for 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 consider patient-reported outcomes when developing treatment plans for your patients with HS?

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