- For years, Selina Ferragamo lived with extremely painful lumps on her armpits and groin.
- She was finally diagnosed with hidradenitis suppurativa, a chronic inflammatory skin disease.
- There is no cure, but medications and lifestyle changes can help keep flares at bay.
In the 10th grade, Selina Ferragamo noticed large, red bumps on her groin. "I thought that they were ingrown hairs or acne because I had very bad facial acne at the time," the 28-year-old told Insider.
While it was painful to sit down sometimes, "it never got really bad," she said, until she noticed the same cysts forming under her armpits years later. By the time she was in college, she started to suspect something was wrong.
"It started being very painful to walk because it felt like every footstep just set sharp, shooting pain straight to my armpits," Ferragamo said. "I couldn't bend over. I couldn't move my arms at all. It hurt to lift anything."
It took years of fruitless doctor's appointments for her to finally get diagnosed with a condition called hidradenitis suppurativa (HS).
According to the American Academy of Dermatology, HS is sometimes referred to as "acne inversa," though it has nothing to do with acne. Instead, it's a chronic inflammatory skin disease that impacts at least 1 in 100 people in the US.
Because it resembles cystic acne or boils, it can be difficult to diagnose right away. But unlike pimples or ingrown hairs, when left untreated, it forms into pus-filled abscesses that can rupture, causing immense pain and scarring.
Her first doctors' visits were so painful, she didn't want to go back
Ferragamo first sought help at a walk-in clinic when she was a junior in college. The doctor, thinking the bumps were just a one-time case of ingrown hairs, lanced open and drained the cysts in her armpits without numbing them enough.
"I felt everything and it was such a painful experience that I didn't really want to have to be put through that again," she said.
For the next three years, she dealt with HS flare-ups on her own. Eventually, life with HS became so unbearable that she sought out medical help again. This time, she was directed to a general surgeon.
He was the first person to ever mention HS to her, but never went into detail about how the nodules can return after surgery. He also shaved her armpits, which were covered in abscesses, while she was awake.
"That was my last memory — that pain of it, before falling asleep for the surgery," she said. He performed surgery on both armpits and didn't put her on antibiotics. When the wounds weren't healing, he tried to cauterize them, which made "everything worse," she said.
Ferragamo's experience lines up with many HS patients. According to a 2020 Canadian report on the condition, some people visit the ER 10 or more times for HS before knowing what it is. Black people, particularly women, are more likely to develop HS — and are also likely to go longer without a diagnosis or treatment plan.
There's no cure for HS, but medications and dietary changes can help
There's no cure for HS, but Ferragamo says medication and lifestyle changes have finally helped her see improvements.
Ferragamo, who also has PCOS, believes hormones play a part in her condition, as her symptoms worsen a lot around her period. The doctor she's seeing now prescribed spironolactone, a popular blood pressure medication used for hormonal acne, and so far it has helped. Additionally, her boyfriend helps her administer Humira injections every two weeks, a powerful biologic anti-inflammatory medication that is FDA approved to treat moderate-to-severe HS.
She also tries her best to avoid dairy and alcohol — though life sometimes gets in the way.
Having a support system has been crucial for her mental health
In addition to physical pain, Ferragamo said that having HS has been hard on her mental health.
"At one point I was scared to show my scars, so I didn't really like wearing tank tops," she said. "When it's time to go swimming, that can be uncomfortable. Because you have to base what you're wearing on your flares."
HS flare-ups can also cause her fatigue, anxiety, and depression. She said she's grateful for the support of the people in her life, especially her boyfriend, who she started dating long before she knew she had HS and who accompanies her to every doctor's appointment.
Another way she's coped is by making memes about the condition, to educate and connect with others. She's also attended an HS symposium and recently participated in a documentary series called "The Beacons: Illuminating HS stories."
The experiences have helped her feel less alone. "The people that I've met with HS are some of the nicest, most genuine and lovely people in the entire world," she said. "Every single time that I've met anyone with HS in person, like after five minutes, it feels like you've known them for like 50 years."
Ferragamo stressed that while living with HS can be incredibly isolating, it's important to speak up and find people who will help you on your worst days.
"If you don't have in your personal life people who are there to support you, there are so many people in the HS online communities that are there to help and just want to be there for you," she said. "They're dealing with exactly what you're dealing with."