Patient Journey
Hidradenitis suppurativa (HS) is one of the most distressing dermatologic conditions, with an average 7-year delay in diagnosis and significant impact on quality of life. Here, we provide a direct account of a patient’s HS disease journey.
Jasmine: My name is Jasmine Ivanna Espy and I am hidradenitis suppurativa (HS) advocate, journalist, and filmmaker.
I first developed hidradenitis suppurativa when I was 11 years old, and I was diagnosed by an HS specialist.
One of the symptoms that I got was raised skin, I had a boil the size of a golf ball under my right armpit, and it was red, tender, and extremely painful.
HS affects my daily life significantly. It is a burden on every aspect of my life from what I eat, to my ability to preform activities, to working, to what I dress, what I sit on, how I operate.
It’s just from top to bottom. It affects everything.
It’s really worn down on my self-esteem and I’ve really had to work to love myself in my body, but also love myself outside of this body and know that I’m more than what is appearing on my skin.
I would say the most difficult part about dealing with HS, especially as a woman, is dealing with it in the groin area and buttock area. That’s where it mostly affects me now.
I unfortunately got a plastic surgery about 4 years ago. It was a reconstruction by a urologist. And he botched my vaginal area where he was trying to remove some of the HS.
And so I’ve had to deal with that area where he did the stitching breaking apart during the pandemic. And it has been extremely devastating on my mental health and my ability to feel like I’m a woman.
I share my HS story for the 11-year-old girl that was never able to have agency over her body. That’s why I do what I do, that’s why I tell my story, so that other patients don’t feel shame.
So that they don’t feel isolation and they don’t feel like they’re a burden or they don’t feel like they’re not wanted. You are wanted.