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Shining a Light on Hidradenitis Suppurativa, a Chronic Inflammatory Skin Condition

A person’s early 20’s are supposed to be a time for exploring new opportunities, not a time to isolate while struggling with painful bumps in sensitive areas of the body.

But that was Athena’s story. The bumps first appeared during puberty. Assuming they were pimples, she didn’t do anything out of the ordinary to address them. But at 21, the bumps became so painful that she needed surgery to drain them.

She blamed herself, thinking it was poor hygiene or something she caused, and was even mis-diagnosed with a bacterial infection. With bumps in her most sensitive areas, she hid her condition and isolated herself from loved ones. All aspects of her life began to suffer because of this unnamed condition.

These lesions continued to appear for more than a decade, putting Athena through an exhausting cycle of doctors and diagnoses without a clear cause or solution for her condition. In 2011, Athena was diagnosed with hidradenitis suppurativa (HS), a chronic inflammatory skin condition that isn’t well-known. Luckily, she was referred to a dermatology practice where she met Dr. Joslyn Kirby – who truly understood the impact of her HS and taught her how to take control of the disease. This newfound understanding was a tipping point for Athena, who finally saw a light at the end of what seemed like a never-ending tunnel of pain, self-doubt and frustration.

Following are five tips Dr. Kirby shared with Athena that she wishes she would have known far earlier in her HS journey.

  1. It’s not your fault – You did not cause your HS. The truth is, HS results from an imbalance in the body’s immune system, causing inflammation throughout the body. This inflammation causes swelling and added pressure on the skin’s hair follicles, leading to painful bumps or boils that can leave intense scars and deep “tunnels” under the skin over time.
  2. It affects more than your skin – While the physical pain of HS can be debilitating, there are other issues that may impact quality of life. Daily tasks can become hard to bear amidst a sudden, painful flare. Dating and intimacy can be difficult when these bumps affect confidence and self-image. Feeling helpless and isolated can lead to anxiety and depression. It’s important to acknowledge and address the psychological impact of HS beyond what is appearing on the skin.
  3. Seek the right help early on – Many patients and physicians are unfamiliar with HS. In fact, the average person lives with HS for 7-10 years before receiving an official diagnosis. Dermatologists are doctors who specialize in diagnosing and treating inflammatory skin conditions like HS – ask them any questions you have about the disease. They can explain the condition and will recommend a treatment plan based on your individual experience.
  4. Don’t wait to speak up – HS can affect people in both visible and hidden ways. Talk to your doctor about all the ways that HS has impacted your life, such as making it difficult for you to work, enjoy hobbies, wear what you want or spend time with your loved ones.
  5. Find your village – No one should go through their HS journey alone. Let your close friends and family know what you’re going through. Engage with HS communities who understand your journey. Hope for HS is a great place to start, and your doctor may be able to connect you with other communities, too.

Athena’s story is very similar to the stories of thousands of others who are silently suffering with HS, even after diagnosis. Athena hopes to help others find the light in their journey by connecting with their own Dr. Kirby and feeling empowered to take back control. For more information and resources about HS, visit www.NoBSAboutHS.com.

Sponsored by AbbVie.

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