Advocate Details Challenges Faced in Path to Diagnosis for Hidradenitis Suppurativa

Athena Gierbolini, president of Hope for HS, a nonprofit advocacy group for those affected by hidradenitis suppurativa (HS), discussed the misconceptions she faced from clinicians regarding her clinical symptoms of HS prior to diagnosis.

Athena Gierbolini, president of Hope for HS, a nonprofit advocacy group for those affected by hidradenitis suppurativa (HS), discussed how her first clinical symptoms were described by clinicians as a hygiene issue, with her diagnosis not coming until 7 years later.

Transcript

As HS is known to often be underdiagnosed and misdiagnosed, how old were you when you were diagnosed with HS and how difficult was it to get a diagnosis?

Right now, the average amount of years that it takes to get a HS diagnosis is 7 years. Thanks to advocacy efforts, we are trying to get that lower, but I would say my very first signs and symptoms appeared in puberty. Now, they were minor, with just some pimples in between my thighs, I’d get a little pimple in my armpit, but I didn't really think anything of it.

Then when I was 21, I had what was diagnosed as a perianal abscess. I had gone to have surgery, I had to have an [incision and drainage] done under anesthesia for it. And at the follow-up, like the whole procedure was embarrassing. Knowing that you're going into surgery, under anesthesia to have your butt operated on is just really kind of like a vulnerable and kind of embarrassing experience.

So, at the follow-up, I asked the doctor, what causes this to happen and what can I do to prevent this? And he looks me square in the eye and tells me that perianal abscesses are caused by poor hygiene, and if I want to prevent this from happening, I need to take better care of myself. He tells me that I can try showering twice a day, and tells me that I should stop scratching my butt. And so I was 21 when he said this to me. I had such a high esteem for the medical profession. At the time, I was really young, and I was like, I spent so many years going to school and this doctor pretty much just called me dirty—in a polite way, but still, he called me dirty.

So, what it did was prevent me from going back to the doctor for a long time because I thought I had a hygiene problem. And so I started looking at all of the ways that I could change my life to make this not happen again, because I didn't want to have to go back to another doctor and be told once again that I was dirty. So, I would change my body wash, I would look at things in my environment, I would clean my bed sheets more often. At one point, I went hypoallergenic everything—it would work and I would think, OK, I have this under control. And then I would get another abscess and think, OK, I'm not doing something right.

So, I lost 50 pounds at one point. I did everything I could to be what I thought was hygienic and take care of myself, and nothing stopped this—new abscesses started appearing in my arms, it just kept going for about 7 years. And then my husband had an appendectomy, and it was the mother of all appendectomies, and so I was in and out of the hospital visiting him.

One day I saw a hospital elevator sign and there was a poster that talked about MRSA [methicillin-resistant Staphylococcus aureus]. The pictures with the holes kind of looked like what I had and I was like, I wonder if that's what I have. Just not knowing enough about MRSA, but I knew that I had a husband coming home from the hospital and if I had something contagious, I sure as heck didn't want to give it to him.

So, I went to urgent care and the doctor told me it's not MRSA, it's MRSN, and [he said to] take these antibiotics and if it doesn't go away, come back in 5 days. So, I came back in 5 days because the antibiotics didn't touch it, and I had a new doctor, and I like to tell this story, he looked younger than I did. So, he had wrinkles in his white coat, I mean, perfectly coiffed blond hair—he was like a baby. But he had obviously just graduated medical school and learned about HS and he takes a look at it and he says, that’s not MRSN, that's HS. And I looked at him and I was like, can you say that again? Like, what is the name of this? So, he hands me a piece of paper and tells me I need to see a dermatologist. And that was my road to diagnosis.