Advocate Speaks on Critical Research Needs in Hidradenitis Suppurativa

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Brindley Brooks, who founded HS Connect (HSconnect.org), a patient advocacy group for those affected with hidradenitis suppurativa (HS), spoke on key areas of HS comprehension and management that warrant further investigation in clinical research.

There are many topics related to the comprehension of 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 those affected with the disease.

Transcript

What are the most critical research needs in HS?

I was just actually reading through an HS textbook and I was writing a list of things that we need to write articles on. I was also emailing a doctor that we've been working with about some study ideas and emailed him and was like: oh, here's another one that came up as a result of reading through this. So much of the areas of study and research that need to be done on HS have to do with—there’s so much unknown about this disease. I mean, even as far as how it's actually happening, what the sequence is, how it's happening, and why that's happening to us other than that it's an autoinflammatory condition, and our inflammation is just on overdrive.

There's so much research and studies to be done on this, it's incredible. There, I think, is a huge link—at least for most people in what we see in the patient population—it’s hormone related for a lot of people who get flares before their periods. There hasn't been a ton of research done on the hormonal link. A lot of the experience that patients have is different, even patient by patient, it doesn't affect us all the same way.

There's such a varied degree for every single potential thing with HS between people. So, it's really hard to gather super specific data on some of that, but there is so much of a need. So many things that you don't even think impact your HS. For me, I learned that mechanical stress was an issue when I was sitting at the office all day. I didn't even know that that was a thing until COVID-19 happened, and then I was working from home and didn’t have to be in the same seat all day and was like: oh, my flares have been dramatically decreased.

So, what can potentially be flares for HS I think is something that we need to look more into as well. There's so much—I really want to see more research in pediatrics. We work with PeDRA, Pediatric Dermatology Research Alliance, as well, and we’re trying to get more research done for pediatric HS, especially since that is such a huge issue for a lot of kids and it's misdiagnosed because people don't think that you can get HS until you start puberty. So much research to be done, and I'm excited that we're going to be able to be part of that.