Advocate Addresses Unmet Needs in the Management of Hidradenitis Suppurativa

Athena Gierbolini, president of Hope for HS, a nonprofit advocacy group for those affected by hidradenitis suppurativa (HS), discussed several pressing issues that warrant consideration to improve the care management of HS.

Greater understanding of the pathophysiology of and effective interventions for hidradenitis suppurativa (HS) is needed in the medical community to adequately manage the burden of symptoms and comorbidities, said Athena Gierbolini, president of Hope for HS, a nonprofit advocacy group for those affected by HS.


As both a patient and advocate for HS, what do you think are the most pressing issues that should be addressed to improve the care and treatment of patients?

I mean, first and foremost, we need the medical community to know what this is, to understand it, and how to best treat it. Most of the patients right now that I know and speak to—if they don't know [HS] belongs in dermatology, they’re just going to urgent care and EDs [emergency departments] to get the abscess treated, and then when it comes back, they go.

So, there's been a big push, especially by the HS Foundation, to get the education out there to the emergency rooms, EDs, and urgent care [clinics] to let these doctors know better how to treat it, and then where to take the patient.

As far as needs go, we always need help with wound care. We need doctors to address the realistic possibility of all of the comorbidities that come along with HS, and then we need mental health care. There's so much that goes into getting to a diagnosis, and then it's almost luck of the draw on whether or not you're going to get a provider that can adequately treat this.

So, one example is when I didn't have the right insurance and couldn't be in the hands of a specialist, I worked with a dermatologist who was the nicest human being, I mean, just an overall great person, a knowledgeable doctor, passionate about what he was doing, but HS was not his specialty.

So, when I had asked him about surgery, I said to him: What do you think about it? He's like, you could try it. And I was like, well, do you know anyone? And he's like, no, you can just Google someone. He was a really nice human being, but I was like, what do you mean? Is it just a lottery? Do I just randomly pull someone?

Having a dermatologist that has networks [and can say:] I know a plastic or a general surgeon that can do good HS work. I know mental health care providers that specialize in chronic disease and can help. I know GI [gastrointestinal] doctors, because of all of the comorbidities; cardiac doctors, because we have a high rate of cardiac disease.

And so we need an overall form of care, because this disease is so high maintenance, so it's hard to pinpoint just one need when there's quite a bit.

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