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 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.