Hiding In Plain Sight: How Advocacy Helped One Woman Emerge from the Isolation of Hidradenitis Suppurativa

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(BPT) - For most teens, “HS” is just another way to refer to high school. When Selina was in 10th grade, HS would come to stand for a little-known disease with a different set of challenges: Hidradenitis Suppurativa (HS).

HS is a chronic, inflammatory skin condition that causes painful bumps in sensitive, private areas of the body. For Selina, HS initially appeared in her groin, then underarms, which she dismissed as razor bumps or ingrown hairs that would appear and disappear. Four years later, when she was 19, the bumps were so painful that she decided to seek medical attention at a walk-in clinic. The clinic staff didn’t know how to properly treat the flare, failing to numb her appropriately to drain and lance the bumps. Selina left with no answers or diagnosis, only physical scars, emotional wounds and a fear of ever seeing a doctor again.

After three more years of suffering through agonizing pain, Selina saw a surgeon who diagnosed her with HS. “He didn’t tell me anything about HS, but he said the name. Baby steps!” said Selina. After years of trial and error, countless doctors, surgeries and remedies, Selina was finally connected with a provider that understood her condition and could help her be more than her disease.

Selina’s story reflects the reality of the nearly 200,000 Americans who live with HS, yet many people, including physicians, are unfamiliar with the disease.

HS is not caused by a person’s lifestyle choices. It stems from an imbalance in the body’s immune system, causing inflammation throughout the body. This inflammation causes swelling and added pressure on hair follicles, leading to painful bumps or boils that can leave scars and deep “tunnels” under the skin over time.

While some physicians are aware of HS, there are dermatologists who specialize in diagnosing and treating this inflammatory skin condition — they can explain the condition and help recommend a treatment plan based on a patient’s experience.

“Avoiding the doctor for too long is one of my biggest regrets. Everyone deserves proper care and I’ve realized there are treatments that can help,” Selina said.

As a way to share her journey and address the emotional impact of HS, Selina began sharing humorous memes on Instagram with the hope that others in the community could relate, and noted that, “followers have told me the page is a light in an otherwise dark situation.” Selina shared three tips that she wishes she would have known far earlier in her HS journey.

Find Appropriate Care

Partnering with a dermatologist who specializes in HS can lead to individualized care. If you think you might have HS or feel like you need more help in managing your disease, ask questions and don’t feel as though you have to accept the first answer — or the first doctor you visit.

“Research the condition and HS-treating specialists, and reach out to others in the community for support,” said Selina. “If I could go back in time, I wish I would have done my due diligence to seek out the best care possible from the start.”

Be Your Own Advocate

While the right dermatologist can make a difference, you are your own best advocate. The effects of living with HS are beyond skin deep, and it’s important to communicate to your dermatologist not only the physical burden, but emotional impact as well. Advocate for a life that is more than your disease.

“Don’t accept feeling miserable when there are dermatologists and a number of treatment options that can help,” Selina said. “I’m shy but knew I had to advocate for myself.”

Don’t Lose Hope

Finding appropriate care can be frustrating. Scheduling dermatologist appointments during flares and times of need may lead to open, honest discussion about how those symptoms may be affecting you.

“Living with HS brings out strength that people don’t even realize is there,” said Selina. “It’s so important that if it’s negatively impacting your life, speak up and don’t give up until you have found the care you deserve.”

Visit nobsabouths.com to find an HS-treating dermatologist and tips for making the most of your dermatologist appointments.

Sponsored by AbbVie.

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