Fighting through the pain of a misunderstood skin condition - Hidradenitis Suppurativa
Posted: November 11, 2019 | Word Count: 667
Imagine experiencing symptoms like pain so severe you may not want to do tasks like showering, going to work or even getting out of bed. For people living with hidradenitis suppurativa (HS), a chronic, debilitating, inflammatory skin disease, this can be their reality.
Often beginning in adolescence, HS is characterized by the appearance of painful bumps or boils on or under the skin, typically in sensitive areas like the armpits and groin. Despite affecting up to 200,000 people in the U.S., many patients and physicians are unfamiliar with or mistake the symptoms of HS. This can lead to missed, delayed or inaccurate diagnoses, taking some people an average of seven years to receive an accurate diagnosis. This delay in diagnosis can be life-altering as HS is a progressive disease — meaning it can worsen over time.
This was the case for Rachelle Smith, a 34-year-old from the greater Columbus, Ohio, area, who experienced countless hospital visits and years spent living with a “mystery illness” that left her bed-ridden, isolated and in constant pain. After seven years, she was finally diagnosed with HS.
“If I can help even one person to not have to go through all the pain and confusion I experienced, I will,” she said. Today, after living with HS for nearly 20 years, Smith is passionate about raising awareness to help more people get diagnosed so they can find the right care as quickly as possible.
What causes HS?
While the exact cause of HS is unknown, it’s believed to be related to an imbalance in the immune system that causes excess inflammation in the body, typically showing up on the skin in the form of boils and bumps. This ongoing inflammation may cause tunnels to form under the skin and more abscesses that can burst or rupture, causing severe pain and permanent scarring.
The isolating impact of HS
The impact that HS has on patients’ lives can be all encompassing. Since the disease usually develops in areas where the skin rubs against skin, and can often smell, people with HS report feeling embarrassed and ashamed, and many suffer from depression, anxiety and extreme social isolation. In Smith’s case, she often missed school, sporting and social events due to fear of judgment.
“I tried to keep my HS a secret. I was embarrassed and didn’t want to be around people,” she said. “Because of my symptoms, I couldn’t participate in activities with friends, which was really hard.”
Despite her family’s support, she still felt isolated by a condition that isn’t widely known or understood. “I didn’t know anyone else that had HS; it was challenging, especially at a young age, to explain the incredible pain I was experiencing and how it affected me,” she said.
Finding the right doctor
Two years ago, Smith met Dr. Scott Drew, a board-certified dermatologist and HS expert who worked with her to develop a comprehensive care plan specific to her needs. By helping her to better understand her condition and working together to develop a personalized care plan, Dr. Drew has helped to ease her symptoms and allowed her to regain control of her life.
“Rachelle’s journey with HS is typical of what a lot of my patients experience. It’s a disease that can seriously impact the quality of a person’s life. Due to the severity of symptoms and the way those symptoms progress over time, it is crucial to diagnose and treat the disease early and appropriately,” Dr. Drew said.
Smith’s experience with Dr. Drew is an example of how important it is for HS patients to connect with dermatologists who understand this disease.
Her advice to others living with HS: “Don’t give up and keep talking to your doctor about what you need. There are treatments out there that can help. You are not alone, there is hope, just keep looking.”
For information and resources about HS, visit https://www.nobsabouths.com.
Sponsored by AbbVie.