From Reactive to Proactive: The Power of Storytelling in Breaking the HS Stigma – BlackDoctor

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Hidradenitis Suppurativa (HS) is a condition that often remains in the shadows, particularly for Black Americans. For many, the journey is defined by years of silence, dismissed symptoms, and misdiagnoses—ranging from simple acne to “poor hygiene”—before ever receiving a name for their pain.

This reality took center stage at the “Losing Yourself to Being Inspired in HS” panel, part of the third annual summit hosted by BlackDoctor and USA TODAY in New York. Moderated by Jade Curtis, Executive Editor at BlackDoctor, the conversation brought together patients, advocates, and experts to dismantle the stigma and offer a roadmap for generational healing.

The Clinical Reality: It is Not Your Fault

The panel opened by correcting a dangerous misconception: HS is not a skin infection caused by a lack of cleanliness. DiAnne Davis, MD, FAAD, Board Certified, Fellowship-Trained Dermatologist, Bare Dermatology, clarified that the condition is a complex issue of hair follicle occlusion and immune system dysregulation.

“What I hope that we can take away from the panel today is that HS is not something, because [of] the patient’s hygiene practices, it is not something that is contagious or something that the patients did to themselves,” Dr. Davis shared.

Because HS is systemic, the impact is profound. “Because it can lead to chronic disfigured scarring, and it can have such an impact on a patient’s quality of life. It really requires a comprehensive approach that is very compassionate for any patient that comes to us seeking care,” she added.

The Stolen Childhood: Navigating a Decade of Delay

The statistics are staggering: it currently takes an average of seven to 10 years for a patient to receive a formal diagnosis. For the panelists, those years were spent in the formative stages of youth, battling a severe disease they didn’t understand.

Jasmine Espy, CEO, Association of Hidradenitis Suppurativa, Inflammatory Diseases, shared the weight of being diagnosed with Stage 3 HS in high school. “Any semblance of a childhood was extracted from me because of this disease. I was in and out of the doctor’s office… that was my life,” she recalled. For Jasmine, the healing journey required navigating “so many stages of grief” while mourning the body she had before the illness progressed.

Imani Futrell, HS content creator and advocate, recalled her symptoms starting at age 11. Without the proper language for her condition, she internalized the stigma. “I didn’t know too much about HS at this time. I didn’t know about it affecting me mentally…about it affecting me emotionally. I only knew the physical, because you see the scars.”

The Weight of the “Put Together” Persona

For Jovette Simmons-Abass, an assistant controller and accountant, living with HS meant maintaining a “Type A” professional exterior while enduring excruciating physical pain in secret.

“I spent so much time trying to hide the pain… I don’t want people to see that I’m in pain,” Jovet shared. Her turning point came when she realized she had to fight for the care she deserved. “I’ve had to become an advocate for myself, even in a doctor’s life at home. Even in [the] emergency room, I had to stop the doctor assertively and nicely and tell them, listen to me.”

The Shift to Proactive Care

Dr. Mondana Ghias, a NYC Dermatologist and HS Specialist, emphasized that the medical community must move away from “reactive” treatments—only seeing a doctor when a flare is at its worst—and toward long-term management.

“Establishing rapport and trust with someone over time really makes a difference as well. And finally, just getting treatment, I think shifting from more of a reactive approach that was previously used for HS towards proactive care, because we want to prevent some of the irreversible scarring and damage that can occur,” Dr. Ghias explained.

Systemic Barriers and Cultural Competency

The panel didn’t shy away from the systemic issues that make HS particularly taxing for Black women. Dr. Davis noted that structural and interpersonal biases often lead to practitioners minimizing patient pain.

“HS disproportionately affects Black patients and in particular, Black women,” Dr. Davis shared, stressing the need for more minority dermatologists and multidisciplinary teams including mental health specialists and OB-GYNs.

A Future of Hope and Authenticity

Despite the challenges, the panel concluded with a message of radical self-love and community. Jasmine, using her journalism background to film documentaries about the HS experience, reminded the audience of the power of visibility.

“I think we should not underestimate how much it means for people to be able to tell their stories and to own their stories. And so for me, as a journalist, as a nonprofit founder, as a storyteller, as a filmmaker, it’s important for people to be able to live in their authenticity without barriers.”

The final takeaway for anyone living with HS was revolutionary: Give yourself grace, find your community, and in all things, “choose you.”