At first, Selina Ferragamo thought she had ingrown hairs in her groin area. The pimple-like bumps made it uncomfortable for her to sit at her desk at school, but they always disappeared on their own. That is, until a few years later, the same type of painful lumps began to appear under her underarms, too, but bigger and they didn’t go away. “I was being told I wasn’t changing my razor blade enough,” says the 26-year-old. “I never thought it was a chronic illness.”
The pain was too intense to wait it out like she had in the past, so Ferragamo and her mom went to urgent care. The doctor lanced and drained the bumps in her underarm area, which she says was an extremely painful process. But this procedure wasn’t curative. Only a few months later, they came back, and this time, they were worse.
At that point, a primary-care physician referred Ferragamo to a general surgeon, who operated on both of her underarms to remove the bumps again. The surgeon also diagnosed her with hidradenitis suppurativa (HS), a chronic inflammatory skin condition that causes boil-like lumps to develop in sweat glands. Finally, six years after her first symptoms, Ferragamo had a name for what she had been experiencing — but she still needed support to live a mentally and physically healthy life. “That surgeon was the first person to ever mention hidradenitis suppurativa,” she tells Allure. “But it was never fully explained l, and I was never told it could be lifelong.”
Hidradenitis suppurativa affects between 1 and 4 percent of the world population. Even though HS can be debilitating, and proper treatment is vital for helping people manage it, the diagnosis process can take a long time. Research suggests diagnosis typically occurs after a seven-year delay, possibly because people usually see a series of general practitioners instead of dermatologists who would be more familiar with the condition, and thus, able to properly diagnose and treat it. According to Harold Lancer, a Los Angeles-based board-certified dermatologist, because HS is so rare, even dermatologists may not see or manage it in their practice.
This painful, difficult journey can also contribute to anxiety and depression in many HS patients. “Chronic illness often causes feelings of stress, shame, and isolation, even leading to depression and anxiety in some people,” says Grace Dowd, a therapist based in Austin, Texas. “Support and validation from loved ones or a therapist can make a significant difference, and even protect people from persistent symptoms of mental illness.”
Ferragamo says because she didn’t know anyone else who had HS flare-ups, she felt lonely, and her mental health took a hit. “I had my best friend and my boyfriend and family, but sometimes you just want to talk to someone who knows exactly what a flare feels like and how hard it is to get up and shower some days,” she says. “It was really hard. I wasn’t aware of how big a problem HS is and how many people have it.”
Because her pain didn’t totally resolve after her surgery, Ferragamo continued advocating for her health. She went back to her primary-care provider and asked for a dermatology referral. The dermatologist took a different approach: attempting to help Ferragamo live with the condition instead of trying to stop the flare-ups altogether.
Lancer says oral or topical corticosteroids can help reduce inflammation, and dermatologists sometimes recommend patients bathe in diluted bleach, which can help with bacterial infections. In some cases, people take oral antibiotics or undergo surgical interventions to cut out the affected area. In Ferragamo’s case, oral and injected antibiotics to manage the intensity of the flare-ups didn’t make her life much easier.
At one point, the HS in Ferragamo’s armpits formed sinus tracts (passageways that extend from a wound underneath the skin through a person’s tissue) that made it difficult to move her arms, bend over, and even walk. Nothing changed until she got a new insurance plan, which allowed her to find a different general surgeon.
Per her surgeon’s recommendation, Ferragamo had two surgeries: one to remove the infected glands and lymph nodes, plus plastic surgery to reduce the scarring in her armpits. She also learned that polycystic ovary syndrome, or PCOS — a hormonal disorder that’s been scientifically linked with hidradenitis suppurativa, which she was diagnosed with as a teenager — may have also caused her flare-ups.
Even if a person has an HS diagnosis, there’s no known cure at this point; patients can continue to get flares of the disease on and off for years. As a result, many doctors focus on helping patients manage their symptoms. Ferragamo says her treatment plan from the general surgeon and dermatologist helped — she gets minor surgical procedures when she has flare-ups — along with prescription medications for treating her PCOS. But focusing on her diet has also proven to be helpful when it comes to improving her quality of life, she says. According to Lancer, lifestyle adjustments can help reduce inflammation and HS flare-ups.
For Ferragamo, identifying foods that flared her HS and cutting down on intake (she thinks processed sugar and gluten may contribute to hers) greatly reduced the number of outbreaks. She doesn’t always perfectly adhere to her preferred diet, but she is noticing a big difference in how she feels.
About a decade later, Ferragamo still gets outbreaks, in which case she goes to the general surgeon, who helps treat them with small surgical procedures and antibiotics. But she says the flares are fewer and farther between, and they often go away on their own without a surgical procedure. “I still get flares two or three times a month, but it’s so much better than before when I was getting a flare every single week,” she says.
Now that her physical pain is under control, Ferragamo has been able to focus on her mental health and supporting others in similar situations. In 2018, Ferragamo launched an HS-focused Instagram account where she often shares bits of her own HS story — but mostly, she uses the account to post humorous memes about living with the chronic illness. “I was sick of being sad about my disease, and I thought humor would be a good way to deal with it,” she says.
Her Instagram account, which now has more than 5,000 followers, opened up a whole new world. Ferragamo started to go through HS-related hashtags and find other people with her condition, which she says made her feel less alone. Sometimes, she gets messages from people who share their diagnosis story with her. Connecting with other HS patients may not change the reality of Ferragamo’s chronic illness, but it does provide support on a health journey that can be both painful and isolating.
For anyone struggling with hidradenitis suppurativa, she recommends finding a doctor you trust and, just as importantly, making an effort to connect with other people who share your experience. “This disease can be so scary, and it’s so helpful to know someone from across the world is feeling the exact same way I am,” says Ferragamo. “I’m so grateful we can talk about it together and that we understand what the other person is going through.”
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