On October 4, UCB and HS Connect staged one of the boldest and most visible health awareness events to date, seizing the spotlight in Times Square to focus on Hidradenitis Suppurativa (HS), a chronic, painful, and potentially debilitating inflammatory skin condition associated with systemic symptoms such as nodules, abscesses, and draining tunnels. The condition greatly impacts patients’ quality of life.
Challenging Stigma on the Runway
The event featured a powerful and emotional HS Connect runway show where individuals living with HS walked in custom gowns emblazoned with statements designed to shatter common myths, such as “We’re not dirty” and “We’re not contagious.” The live event confronted stigma and fostered empathy for this often-misunderstood condition.
“We’re really trying to combat all of those stigmas… to show on that runway that that is not who we are. That our HS does not define us, that our pain is real, that we are beautiful, that HS is not an STD, that HS impacts men too, Brindley Brooks, CEO and Founder of HS Connect, tells BlackDoctor.
Brooks, who has lived with HS for 36 years, began her advocacy after a surgery made her realize HS was not an isolated disease.
“That really started my engagement in the HS community and understanding that there are such unmet needs for our community that I felt like I could be the person to potentially help start to meet those needs,” she shares.
Her mission is deeply personal, as her two daughters, including one who walked in the show, also live with HS.
“I did not want my kids to carry that same weight… I wanted to do it differently, mostly for them, and then realizing what an impact that has on everyone else in the community… that naturally translated into being kind of an overarching theme of bringing people together,” Brooks notes.
A Monumental Call for Visibility
Adding to the spectacle, the “Find Us: From Hidden to Heard” campaign included a billboard takeover on One Times Square, featuring 15-second looping videos seen by millions.
“It was really important to us to do this in Times Square because for so long we’ve hidden and we’ve been told to be ashamed of our bodies… And it was time for the shame for us to stop and for us to be seen and heard and validated in our disease,” Brooks explains.
The activation also unveiled the world’s largest bandage ball—a striking, symbolic installation that earned a Guinness World Record. The ball represents the daily physical and emotional challenges faced by those with HS, including the weight of shame and the high cost of supplies.
“I think the bandage ball is a great symbol of the struggle that we go through in multiple ways… because of the weight that we carry naturally with the shame of our HS, but also with the weight we carry of… the amount of money that we spend on bandages that isn’t covered by insurance,” Brooks notes.
Education, Community, and Mental Health
Approximately one percent of the population in most studied countries lives with HS. UCB’s Make HStory initiative, developed in collaboration with patients and healthcare providers, is dedicated to increasing understanding and empowering patients to have informed conversations with their dermatologists about management options.
“It’s two-pronged because it also is an educational tool for even physicians… We need to lead people to medical dermatology, and medical dermatology is where they can start to get good treatment for their HS. And the MakeHStory Campaign is a tool that physicians and patients can look upon for more information,” Rhonda Peebles, VP and Head of Dermatology at UCB, tells BlackDoctor.
The event was inspiring for those who had been living in silence, proving that “There’s power in community.”
“That was very important to us, to really relay the real, raw images of what it looks like to live with HS with each of these people. And we specifically picked different skin tones… so that if you were walking by… now maybe that clues you in to say, ‘Okay, let me ask about this,’” Brooks says.
Recognizing the significant mental health burden of HS, Brooks also founded Healing Space to meet this crucial need.
“No mental health resources existed, and we built them… I think that is the main thing for the entire campaign is just to let people know they are not alone, and we are no longer hiding,” she affirms.
Industry and Advocacy Unite
Peebles commends the partnership with HS Connect.
“Kudos to Brindley for her vision of this… It greatly matches the core of who we are as a company here at UCB, where we are always committed to patients and seek to always put patients in the center,” she says.
She urges both patients and physicians to be persistent, noting that it can take up to ten years to get a proper diagnosis.
“Don’t give up. For patients, it can take up to ten years before they get a good diagnosis of HS… And the same applies to physicians: don’t give up on the patient. Give them the time that it takes, listen to their story, and then together… they’ll be led to the best therapies,” Peebles adds.
Looking ahead, Brooks aims to build off the momentum by making the awareness effort global, taking it to other countries to ensure validation and acknowledgment for patients worldwide. UCB’s future efforts will focus on rural areas where physician access is limited and exploring the impact of early treatment to potentially change the long-term outcomes of the disease.
For more information on HS, visit makehstory.com. For more on the Find Us campaign, visit hsconnect.org.
