Documentary filmmaker shines light on living with HS

Thanks to a burgeoning pipeline of potential new treatments and new education and awareness efforts, hidradenitis suppurativa (HS) is finally getting the attention that it deserves.

Novartis recently premiered a new docuseries on life with HS at the 2023 Tribeca Film Festival. DermWire sat down with Jasmine Ivanna Espy to talk about "The Beacons: Illuminating HS Stories" and her experience with HS.

Jasmine was told by her doctor that the extremely painful, golf-ball size boil in her armpit could be HS when she was 11. It was another three years before she got a formal diagnosis.  It was advocating for others with HS that helped her come to terms with the disease. 

DermWire: How did you come up with the idea for The Beacons? 

Jasmine Ivanna Espy: That was a collaboration. It is this idea that there are these individual people who are just kind of shining a light on this particular subject.  So, I feel like Beacons was the personification of who we are in these communities.  

DermWire: Based on your experiences, how can doctors better diagnose and treat HS? 

Espy: What I would've wanted to hear when I first was dealing with HS as someone who was trying everything that they possibly could from treatments to support groups is that it's not just the physical, it's also the emotional, it's the spiritual, it's the community aspect of things.

There are layers to dealing with this condition. When you factor in all of those things, you can really have a whole wellness experience and create a space for patients to feel like they are truly taken care of.

DermWire: What would you want others to know about living with HS? 

Espy: “I remember I was talking to my mom, and I told her that when I wake up I think about HS, and when I go to sleep, I think about HS. Everything in my life revolves around this condition. You have to shift everything in your life to basically accommodate it. So, it's like when you wear clothes, are you going to seep through your clothes? Do you smell? You can't sit on white cloth. You can't do a lot of things. In the docuseries, you saw that [one HS patient] was talking about how she had to give up dance. We have to basically become different people, and I think when we think of chronic illness and especially something like HS, it's like, "Oh, it's probably not that bad," but it really is that bad.”

DermWire: Any tips to share with other HS patients?

Espy: “HS is such an individual experience, so what I might do might not work for someone else. People affected with HS should really lean into their primary care physicians so that they can find the best options for themselves.

DermWire: Fast forward 5-10 years, where do you see HS in terms of treatments and understanding?

Espy: “I see a cure. That's for one. I also see that HS is well known. It's not something that people are questioning. So just like when you say the name of any other chronic illness, they're like, ‘Oh, I know what hidradenitis suppurativa is.’  It's not something that people hide from. It's not something that people are ashamed of. It's regularly talked about in households, in friend groups, and relationships, and people feel confident. And even though there are symptoms with the condition that make life difficult, there are advancements where people aren't dealing with those different things.”

PHOTO CREDIT: Ben Hider Images