A Real Unicorn (Doctor): Part 1
Even in the rare disease world, I am rare. I have seven rare diseases, and another twelve not-so-rare diseases (and when you lump all of these together, they are comorbidities and they make my life more difficult). I am a unicorn especially because of this number and because of the nature of some of the rare diseases.
So what does a unicorn need? A unicorn doctor. I have actually stumbled upon a few, and I want to share the story of the HS unicorn doctor I found, but also the complex feelings I have about this phenomenon.
Finding a rare hidradenitis suppurativa doctor
I had only been in this particular city for three years and was struggling with all of these diseases while also going through a disability hearing that I had pursued for three years as well. As part of my diagnosis journey, I finally saw an OB/GYN that diagnosed me with HS after experiencing symptoms for 9 years. She suggested I find a dermatologist.
I got set up with this dermatologist who upon first meeting didn’t seem like a unicorn doctor. She was very sweet-natured, very thorough, and reassuring. I never left her office frustrated, only hopeful. We tried biologics and topicals, but I had horrible reactions, and the biologic actually accelerated my HS to other areas and made it much, much worse, very quickly.
While dealing with this, I finally had my disability hearing and was successful in being determined to be disabled (not because of HS; I had 10 brain surgeries and even today, I am considered in failure). I was having trouble rounding up other doctors for some of the issues that I desperately needed addressing, and so I made the decision to move away again to the last state where I lived before. As I was wrapping things up at my last HS appointment with my dermatologist, she said to me, “You know, I use lasers to treat HS, and it’s very successful.” I froze. Then I said, “Wait, what?” I perked up. I felt like this was a moment.
A new hidradenitis suppurativa treatment
“Absolutely,” she said. “We use two different lasers. One pokes holes in the skin to kind of aerate it so the bacteria don’t build up, and one destroys the lesions. We can put a topical on your skin beforehand so it doesn’t hurt so much. This is something I just started doing because one other HS patient talked me into trying it, and it seems like it’s really working.” I told her I was leaving in five days and there was no possible way I could get a treatment before leaving, but would it be okay to come back for one? “No problem,” was her answer.
Boom. Unicorn doctor. For the record, I have actually flown back for three treatments and am 70% cleared, even with being stage II. I learned that lasers are appropriate all the way through stage III. What makes her a unicorn doctor? She offered me a treatment I didn’t know existed, and it wouldn’t interfere with any of my other conditions or treatments, and she agreed to try these treatments initially solely based on the suggestion by another patient – because this was before there were any papers really widely published on the results.
She’s also still incredibly nice and there's a lot to be said for bedside manner. The way she has described how the lasers treat our HS issues is now how I explain it to other patients, even when I send them information that is much more scientific.
Read Part 2 of this series, where I explain what took place during these treatments.
Have you shared your HS story?