What It’s Like to Live With Hidradenitis Suppurativa — As Told to
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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