Hidradenitis suppurativa, or HS, is a chronic skin condition that causes recurring, painful boils and abscesses, often in areas where the skin rubs together (underarms, groin, breasts, and buttocks). The condition disproportionately affects Black communities, who experience a higher prevalence, more severe disease, and delayed diagnoses. In addition, Black patients are more likely to present with Hurley Stage 3 (severe) disease and face greater barriers to high-quality care.
In the panel, “Breaking the Silence: Powering Awareness and Care for HS,” at BlackDoctor’s 10th Annual Thought Leadership Summit, Dr. Adam Friedman (George Washington University), Charity Williams (UCB), Tiffany Crawford (UCB), and patient advocates Jeremy Hinkston and Cydney Carter, discussed the challenges people face in seeking care, the stigma surrounding the disease, and how healthcare providers can better support patients.
“HS isn’t just a skin condition — it is associated with just about every medical condition,” Dr. Friedman said.
HS is associated with several other conditions, including obesity, diabetes, heart disease, depression, and chronic pain. In addition, the chronic skin condition can greatly affect a person’s mental health, mobility, relationships, work or school attendance, and self-esteem.
It is important to remember that HS is a medical condition — not a sign of poor hygiene or something that the patients bring on themselves. Managing the condition can be physically and emotionally taxing, as the chronic pain and flare-ups can interfere with daily activities.
Black people with HS can face significant delays, often waiting about five years to get a correct diagnosis. Research shows this is more than a year longer than for white people, with Black patients typically seeing multiple doctors and experiencing more advanced disease before getting a diagnosis.
Stigma can also play a role, with HS symptoms often being mistaken for something else. “Many Black people don’t talk about HS because they believe it’s tied to chronic boils or STDs,” Crawford said.
The stigma surrounding HS can keep people from seeking care. Weight stigma, in particular, can also complicate care for people living with HS, despite the condition being far more complex than body size alone.
Hinkston was bedridden for nine months due to severe HS, which also caused dramatic changes to his weight and overall health. “I went from weighing 200 pounds down to 165 pounds,” Hinkston said. “I was at my worst, and [HS] didn’t stop. It’s not about weight.”
The healthcare system plays a significant role in the disparities people with HS face. Many providers are not trained to identify early signs of HS, leading patients to continue suffering for often years on end.
Hinkston asked the question: “How are we supposed to move forward if a doctor is not taking the time to research what’s destroying you?”
The panelists emphasized the importance of earlier recognition, dermatology referrals, and equitable access to quality care.
“We need to ensure a pathway to access and to elevated care,” Crawford said.
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People living with HS may need to advocate for themselves in the doctor’s office when their symptoms are minimized or dismissed. It’s critical to ask questions, seek second opinions, and push for referrals to specialists and treatment options to ensure your concerns are taken seriously.
“Just because there’s a white coat, doesn’t mean they’re right — push back,” Crawford said.
Carter spent several years seeking help for her HS, and once she got it, she still felt lost as to how to care for her condition. “I felt defeated and that there weren’t a lot of options for managing a chronic disease at 17,” she said.
HS can leave permanent scars and can greatly affect a person’s body image. Many people struggle with shame and isolation, which can ultimately take a toll on their mental health. But as Carter said, “It’s okay to have scars or not have an aesthetically pleasing body.”
In a standout moment of the panel, an attendee publicly shared her HS story, prompting Hinkston to come down and give her a hug and “welcome her into the HS family.”
Moments like these highlight the importance of spreading awareness, especially because HS remains highly stigmatized, misunderstood, and too often dismissed by both healthcare providers and the broader community.
Panelists underscored that greater awareness, earlier diagnosis, compassionate care, and stronger support systems can help ensure people living with HS no longer have to suffer in silence.
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