There are many topics related to understanding hidradenitis suppurativa (HS) that require clinical investigation, including its hormone-related implications, variability and impact on pediatric populations, said Brindley Brooks, who founded HS Connect (HSconnect.org), a patient advocacy group for people affected by the disease.

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What are the most critical research needs in HS?

In fact, I was reading an SH textbook and writing a list of things we need to write articles about. I was also emailing a doctor we worked with about study ideas and I emailed him and said oh here’s another one that popped up as a result from reading this. A lot of the areas of study and research that need to be done on HS have to do with…there are so many unknowns about this disease. I mean even in terms of how it actually happens what is the sequence how does it happen and why does it happen to us other than it’s an autoinflammatory disease and our inflammation is just in overdrive.

There’s so much research and studies to be done on this, it’s amazing. There, I think, there’s a huge connection – at least for most people in what we’re seeing in the patient population – it’s hormone-related for a lot of people who have flare-ups before their period. There hasn’t been a ton of research on the hormonal link. Much of the patient experience is different, even patient to patient, it does not affect us all in the same way.

There is such a varied degree of every potential thing with HS between people. It is therefore very difficult to collect very precise data on some of these questions, but there is so much need. So many things you don’t even think impact your HS. For me, I learned that mechanical stress was a problem when I sat at the desk all day. I didn’t even know it was a thing until COVID-19 happened and then I was working from home and I didn’t have to be in the same seat all day and I was like, oh, my rockets illuminating lights have decreased considerably.

So what can potentially be flares for HS, I think that’s something we need to look at more as well. There’s so much—I really want to see more pediatric research. We’re also working with PeDRA, Pediatric Dermatology Research Alliance, and we’re trying to do more research on pediatric HS, especially since it’s a huge problem for a lot of kids and it’s misdiagnosed because people don’t think you can get HS until you start puberty. So much research to do, and I’m glad we could be a part of it.