HS TRUTHS Spotlights Hidden Patient Realities

Today, Incyte launched HS TRUTHS, an educational initiative designed to shed light on the often-overlooked realities of hidradenitis suppurativa (HS). The campaign highlights the physical, emotional, and social toll of HS through patient-led storytelling, aiming to strengthen communication between people living with HS and their health care providers.¹

Understanding the Burden of HS

HS is estimated to affect at least 1% of the population, though true prevalence remains debated. The condition is marked by recurrent, painful nodules and abscesses, often leading to sinus tract formation, irreversible tissue damage, and scarring. Lesions commonly occur in intertriginous areas such as the underarms, groin, buttocks, and beneath the breasts.²

Patients frequently experience daily challenges tied to chronic pain, drainage, and malodor. The impact extends well beyond physical symptoms, with many reporting embarrassment, depression, and diminished quality of life. Diagnostic delays compound these challenges: research suggests that an accurate diagnosis may take 7 to 10 years, and misdiagnosis is common. During this period, patients often endure ineffective treatments and worsening disease progression.

Patient Voices at the Center

HS TRUTHS distinguishes itself from traditional awareness campaigns by focusing on candid patient narratives. Stories from individuals like Jasmine, Katelyn, Parish, and Ashley highlight how HS affects every aspect of life—from clothing choices to relationships to career opportunities.

“HS TRUTHS recognizes that each person’s experience is unique and emphasizes the importance of health care professionals engaging deeply with their HS patients,” expressed Parish Armstead, an HS patient advocate and participant in the HS TRUTHS campaign. “I’m thrilled to be part of a campaign where our voices and stories are heard. Too often, campaigns miss the reality – we’re not just talking about bumps under the arms. We’re talking about chronic pain, lost relationships and years of feeling dismissed. This campaign tells the whole truth.”

By presenting unfiltered accounts, the campaign underscores that HS is more than a skin condition; it is a complex, life-altering disease that can leave patients feeling isolated.

Barriers to Communication

A key focus of HS TRUTHS is encouraging stronger dialogue between patients and providers. Many individuals with HS report difficulty in discussing their symptoms, often due to feelings of shame or anxiety. A recent survey showed that 75% of patients experienced negative emotions when engaging with their healthcare teams, which may hinder open communication and delay appropriate care.

"Managing HS is inherently complex due to its multifaceted nature," said Steven Daveluy, MD, professor and program director, Wayne State University. "The condition presents unique challenges at every stage, from diagnosis to treatment, often requiring a thoughtful approach to escalating treatment options as the condition progresses. Campaigns like HS TRUTHS are invaluable – they bring real patient stories forward, helping us better understand the full spectrum of the impact of HS and how we can better support those affected."

Industry and Clinical Perspective

Incyte, which has ongoing research efforts in immunology and dermatology, developed the initiative as part of its broader commitment to address conditions marked by high unmet medical needs.

“Our commitment to addressing the unmet needs of people living with complex and often misunderstood conditions like HS is unwavering,” stated Joslyn Kirby, MD, executive medical director at Incyte. “With the launch of HS TRUTHS, we are bringing forward an honest, deeply respectful portrayal of the lived experience of people with HS. This campaign is shaped by patient voices and stories that reflect the diversity, challenges and strength of this community. It’s about meeting people where they are—with empathy, understanding and a commitment to do more.”

The company has also highlighted its continued efforts to explore immune-mediated dermatologic conditions, including atopic dermatitis, vitiligo, lichen sclerosus, and prurigo nodularis.

Looking Ahead

HS remains underrecognized and frequently misunderstood, despite its prevalence and profound impact. Educational initiatives such as HS TRUTHS may help bridge gaps in awareness by validating patient experiences and promoting empathy among healthcare providers. By fostering open, honest conversations, the campaign seeks to support earlier diagnosis, improve care pathways, and reduce the stigma often associated with HS.

References

1. Incyte launches HS TRUTHS to spotlight the true lived experience of hidradenitis suppurativa. News release. Incyte. Published September 3, 2025. Accessed September 3, 2025. https://www.businesswire.com/news/home/20250903763414/en/Incyte-Launches-HS-TRUTHS-to-Spotlight-the-True-Lived-Experience-of-Hidradenitis-Suppurativa
2. Krueger JG, Frew J, Jemec GBE, et al. Hidradenitis suppurativa: new insights into disease mechanisms and an evolving treatment landscape. Br J Dermatol. 2024;190(2):149-162. doi:10.1093/bjd/ljad345