Advocate Speaks on Diet, Holistic Care in Hidradenitis Suppurativa

Some people with hidradenitis suppurativa (HS) have shown benefit with dietary strategies, but there remain gaps in clinical knowledge regarding the holistic management of the overall patient population, said Athena Gierbolini, president of Hope for HS, a nonprofit advocacy group for those affected with hidradenitis suppurativa (HS),

Transcript

Can you discuss holistic considerations for the management of HS and any gaps in knowledge here?

So, one of the pressing needs or one of the pressing topics with patients, and one of the things I forgot to mention in my road to treatment, diet is a huge, huge topic amongst the HS patient community. So, at one point, when I had to leave the Humira [adalimumab] study and I was going to look at more holistic ways of treating this because I thought that was probably better to do with pregnancy, I had gone to a holistic doctor—a functional/integrative medicine doctor or something like that—and he sent me home with like $400 worth of medical supplements.

Paste for your GI [gastrointestinal] tract, it was an orange salve, pills, it all smelled horrible. He gave me this presentation with all of these little circles on what he thought was affecting the immune system and how this was to play. And I gave it an honest-to-god shot, but it just didn't work for me.

Patients with HS are very curious about diet. We get asked that a lot and a lot of doctors get asked a lot about that, and there's all kinds of thoughts and theories. As general advice, we always say just try a basic elimination diet. Like if you think it's potatoes, just eliminate them first, but don't go full autoimmune paleo. I don't know if you ever heard of that. You can't drink coffee on it, and it's extremely restrictive. They talk about nightshade vegetables and stuff like that.

Some patients have had success with dairy and removing dairy out of their diet—I know that that's the case for acne as well. But it's all very individualized, and right now there's not one conclusive thing that kind of works on everybody. Like Humira has great success, but it doesn't work on everybody. And so that kind of tells me that the nail hasn't quite been hit on the head. But diet is something that patients with HS always seem to want to talk about.