The Hidden Reality of Living with HS

Many people have never heard of the chronic skin disease Hidradenitis Suppurativa (HS), but it’s not rare—it’s just rarely talked about. Characterized by painful nodules, deep lumps, and scarring, this progressive inflammatory condition affects millions of people worldwide. Yet, due to a lack of awareness and the stigma surrounding private skin conditions, it frequently takes years for individuals to receive a correct diagnosis.

To bring this hidden condition into the light, Coast to Coast TV reporter Elise Thor sat down with board-certified dermatologist Dr. Vivian Shi from the University of Washington and patient advocate Catina Morrison, RN to discuss the realities of living with HS and how a new educational initiative is helping patients find answers sooner. Beloved real housewives star Mary Cosby and American Idol alum Jackson Gillies are trying to fight against stigma relating to HS.

Watch the full Coast to Coast interview below:

https://youtu.be/aeNgprnYZvI?si=DEeT7HYwFJqTJMqg

The Reality of Living with HS

For many, the intense physical pain of HS is compounded by an emotional toll of isolation. Because the painful bumps and boils typically form in private, sensitive areas where skin rubs together—like the armpits and the groin—patients often hide their symptoms out of embarrassment.

This silence extends even into the music and entertainment industry. High-profile figures have historically kept severe skin conditions hidden, but major celebrities are starting to change that. Recently, international K-pop superstar and lead singer of FT Island, Lee Hong-ki, bravely went public with his severe, decade-long struggle with HS to break the exact stigma being discussed today. Similarly, American Idol alum Jackson Gillies has used his platform to openly advocate for the HS community, proving that even those under the brightest spotlights face these hidden battles.

When public figures speak out, it sends a powerful message to millions of silent sufferers: you are not alone, and your symptoms are real.

Overcoming the “Diagnosis Gap”

According to Dr. Vivian Shi, a leading expert on complex inflammatory skin conditions, the average time from disease onset to an accurate diagnosis is a staggering 7 to 10 years.

Because early-stage HS boils tend to come and go with quiet periods in between, many people wait to see a doctor hoping it will go away on its own. However, HS is progressive. Catina Morrison shared her own harrowing journey with the condition during the interview, noting that her symptoms first appeared at just 11 years old, but she wasn’t accurately diagnosed until she was 41. That represents 30 years of navigating painful boils and disruptions to daily life without answers.

“I’m here to encourage people to advocate for their health so that they can get the proper diagnosis sooner,” Catina emphasized.

A Multimodal Approach to Care

Because HS is highly complex, Dr. Shi emphasizes that managing it requires a multimodal treatment plan tailored to the individual. This typically includes:

• Lifestyle Modifications: Adapting daily routines to minimize flare-ups.
• Targeted Medications: Tailored medical treatments when appropriate to manage systemic inflammation.
• Procedures: In more advanced cases where scarring and draining tunnels have formed, minor clinical procedures can offer relief.

The ultimate goal is to capture the “window of opportunity”—treating the disease early before permanent skin damage happens.

Find Your Truth

The HS Truths initiative is an educational campaign by Incyte designed to bring visibility to the condition and empower individuals to speak up. If you or a loved one are experiencing persistent, painful boils in sensitive areas, don’t wait. Talk to your doctor, get a referral to a dermatologist, and visit myhstruths.com for resources and support.

For more stories uncovering health, tech, and lifestyle trends across the nation, stay tuned to Coast to Coast with Heather Dawson.