- Jasmine Espy struggled with painful cysts for years until she was diagnosed with hidradenitis suppurativa (HS).
- HS is an inflammatory skin condition that impacts 1 in 100 people.
When she was in 6th grade, Jasmine Espy woke up one day with a golf ball-sized cyst under her right armpit.
"I sat on the edge of my bed kind of in disbelief," Espy, 29, told Insider. She went to the bathroom and lifted her arm. "It was extremely painful," she said. "It was tender to the touch and just very hard. It felt like there was a mass underneath my skin."
Her mother thought it was a boil and booked an appointment with Espy's pediatrician, who gave her instructions to use a hot compress until the nodule came to a head and burst.
By high school, the bump returned and multiplied all over Espy's body, including her armpits, groin, buttock, stomach, side of her torso, back, and under her chest. She was eventually diagnosed with hidradenitis suppurativa (HS), an incurable chronic inflammatory skin condition that impacts roughly 1 in 100 Americans.
HS is characterized by hair follicles becoming swollen from keratin, sweat, and bacteria. The cysts are painful and can burst, which causes scarring, and treatment options greatly vary based on the individual.
For Espy, it took three years after that first bump to get diagnosed — and many more years to find ways to reduce her symptoms.
Espy was misdiagnosed several times and told she had a fatal blood disorder
Black people, particularly women, are more likely to develop HS. They are also more likely to go longer without a diagnosis or treatment plan.
In between the first bump and getting a diagnosis, Espy "had pus- and blood-soaked sheets, shirts, underwear, bras — everything," Espy said. "I was waking up to my clothes sticking to my body."
One doctor told Espy she had a rare blood disorder and only had a few months to live. Another diagnosed her with MRSA, a contagious bacterial infection, and she had to temporarily self-isolate in her house — even though no one else in her family had symptoms.
Eventually, her mom found an HS clinic in Michigan, where Espy received an HS diagnosis in the 9th grade. Espy's clinical trial treatments included everything from rounds of antibiotics to laser therapy, none of which led to any notable changes, she told Insider.
Dietary changes, exercise, and surgery improved her symptoms
In her college years, Espy wondered if her condition — sometimes called "acne inversa," though it's unrelated to acne — could be affected by her diet and lifestyle. She started logging the foods she ate and skipping the campus bus to walk to class instead. Some small studies have shown that weight loss as well as dairy-free and plant-based diets can improve HS symptoms.
After seeing fewer HS lesions, she went vegan and started buying lots of fresh produce after watching documentaries like "Supersize Me" and "What the Health." She also went to the gym six times a week and lost about 150 pounds.
While her symptoms improved, she still had scarring, tunnels, open wounds, and active lesions, so she eventually had laser procedures on her armpits, inner thigh, and stomach.
Then a "botched" surgery severely impacted her mental health
After the success of the laser surgeries on other parts of her body, Espy wanted one performed on her groin, but was put on a year-long waitlist for a consultation. Wanting to speed up the process, she pursued a scalpel surgery instead.
At first, the urologist who performed the procedure told her that it would involve sewing her labia to her thigh — something she didn't want. After discussing it, Espy said the doctor assured her would only extract part of the tissue for less drastic results.
When she woke up, however, she realized he went ahead with his original plan: Her labia was sewn to her thigh, as she feared.
"I couldn't wear typical underwear because I didn't have a bikini line on the left-hand side," Espy said. "My underwear would slip onto my leg and it would create such discomfort."
The groin surgery, which Espy referred to as "botched," has been one of the most difficult parts of having HS.
"I still haven't had sex," Espy said, "I've talked to other advocates who have encouraged me that there will be someone who will love me, but I haven't experienced that."
Therapy inspired her to become an advocate and produce a docuseries
Espy started seeing a therapist who specialized in treating patients with HS, and the therapist suggested that she become an advocate for the condition. Last month, a documentary series she co-produced with drugmaker Novartis called "The Beacons," about people living with HS, premiered.
The experience afforded Espy a chance to travel the world, as well as meet other HS advocates.
Those relationships — as well as the ones with her clinic doctor and therapist — had a tremendous impact on making her feel less alone.
"I do battle with feelings of not wanting to be here," Espy said. "But now, I have the pillars and I have the community to lean into to deal with those things when they come up."