By: Jasmine West
For people living with Hidradenitis Suppurativa, getting a diagnosis can take years. Finding someone who understands what the condition does to the body — and the emotional toll that comes with it — can take even longer.
That was part of what brought more than 100 patients, caregivers, advocates, healthcare workers and researchers to Detroit for the 2026 I RECLAIM HS Summit.
The three-day gathering, held at the College for Creative Studies Taubman Center, focused on the treatment, stigma and health disparities surrounding Hidradenitis Suppurativa, commonly called HS.
HS is a chronic inflammatory skin condition that can cause painful lumps, abscesses, drainage and scarring, often in areas where skin rubs together. The condition is frequently misunderstood or misdiagnosed, leaving some patients to live with worsening symptoms before they receive an explanation for what is happening to their bodies.
The Association of Hidradenitis Suppurativa and Inflammatory Diseases hosted the national summit under the theme “Rooted in Community. Rooted in Us.”
Attendees traveled from across the country for sessions on treatment, research, mental health, relationships, self-advocacy and navigating the healthcare system. The weekend also gave people living with HS time to talk with one another outside of a doctor’s office or medical appointment.
That connection matters for a condition that can be difficult to discuss openly. The pain, wounds and scarring associated with HS can affect how people dress, work, socialize and maintain intimate relationships. Some patients also face shame or isolation because others do not understand the condition.
Black and Hispanic communities are affected by HS at higher rates and often face greater barriers to diagnosis and treatment. Those disparities made Detroit a fitting location for a national conversation about who receives care, who gets believed and how long patients must wait for answers.
“This weekend demonstrated the power of what happens when patients, advocates, healthcare professionals, and industry partners come together with a shared commitment to improving lives,” said Jasmine Espy, founder and executive director of the association.
Espy said the summit was designed to give patients information while also building a community around people who may have spent years feeling overlooked.
“We are creating spaces where people living with HS feel seen, supported, and empowered to reclaim their health and their stories,” she said.
The summit included updates on treatment and research, but organizers also placed attention on the everyday realities of living with the condition. Sessions addressed mental wellness, relationships and the challenge of speaking up in medical settings where patients may feel dismissed.
For some attendees, being in a room with other people living with HS offered something medical care alone cannot always provide: recognition.
Patients were able to share experiences with people who understood the pain, frustration and uncertainty that can come with the disease. They also left with information they could use when talking with doctors, seeking treatment or advocating for better care in their own communities.
The Detroit gathering placed patients at the center of a conversation that has too often happened without them.
By the end of the weekend, attendees had formed new relationships and support networks they could carry home. For people accustomed to explaining their condition to others, the summit offered a rare space where little explanation was needed.
