Advocate Discusses Misconceptions, Culturally Sensitive Care for Hidradenitis Suppurativa

There are several misconceptions regarding hidradenitis suppurativa (HS) that clinicians should address with a culturally sensitive approach, said Athena Gierbolini, president of Hope for HS, a nonprofit advocacy group for those affected with HS.

Transcript

Can you speak on misconceptions in the management of HS?

We understand fully that cigarette smoking and weight loss are very important topics. Cigarette smoking can kill you—it's been proven, it's very bad for you—and being overweight is indicative of being unhealthy and we get that, too. If I meet a doctor, and in the first 30 minutes, they tell me that I need to quit smoking and lose weight, I kind of tune them out.

We are working, as the patient community, to kind of help doctors understand that we have organized online and we know a lot of patients who are thin that have this disease. There are patients who have anorexia that have this disease. And again, I'm not saying that we shouldn't be trying to incorporate a healthy diet into our lifestyle, that smoking isn't horrible for you—it absolutely is—but maybe that can be a nudge in the second or third appointment and done gently.

This reputation that patients with HS have that we’re overweight smokers only leads into more of this stigma that we are doing this to ourselves. If it were as simple as that we would do this, but it's a little more complex than that.