Empowering the HS Community Through Wellness, Nutrition, and Compassion

Wellness goes beyond skin when it comes to managing hidradenitis suppurativa (HS). In an effort to spread awareness of that concept, HS Connect founder and CEO Brindley Brooks and COO Cristina Curp took the stage at UCB’s recent HS Summit and explored nutrition, mental health, trauma, self-care, and the healing power of community.

Together, Brooks and Curp opened the door to real conversations that too often get lost in clinical settings.

RETHINKING WELLNESS AND NUTRITION

One of the most common questions in the HS community is: “What should I eat to manage this disease?”

Curp, who spent years navigating HS on her own before finding remission through nutrition, emphasized that there is no one-size-fits-all diet for HS.

“People always ask me, ‘Just tell me what you did,’” she said, “but what worked for me may not work for you.”

Instead, she recommends a more intuitive, sustainable approach: start by getting in tune with your body. That can mean journaling symptoms, food intake, bowel movements, energy levels, and emotions. Once a baseline is established, small changes such as drinking more water, eating more protein, or walking after meals can be introduced gradually and monitored for their effects.

Curp noted that blood sugar regulation is a key factor for many with HS.

“About 75% of us have some form of metabolic dysfunction,” she said, adding that while she doesn’t advocate for cutting out all sugar or living without enjoyment, she encourages a conscious relationship with food. “You might love a food, but if it doesn’t love you back, it’s time to rethink the relationship.”

DISMANTLING DIET TRAUMA AND TOXIC NARRATIVES

The word “diet” is often steeped in shame, trauma, and restriction, especially for those who have lived with HS since childhood. Both Brooks and Curp opened up about their early experiences with body shaming and restrictive eating, from Richard Simmons-era weight programs to being placed on diets as young as 8 years old.

“Instead of focusing on what to cut out, focus on what to add,” Curp suggested.

This mindset shift, from deprivation to nourishment, can make a profound difference in how people relate to food and their bodies, she said.

Curp also challenged the pervasive (and flawed) assumption that weight loss alone will “cure” HS.

“Wellness isn’t about a kale salad and matcha latte,” she said. “It’s about doing what works for you, even if that’s just a 2-minute breathing exercise.”

SELF-CARE DURING FLARES: BACK TO BASICS

When asked how she manages difficult flares or emotionally intense periods, Curp’s advice was refreshingly simple: go back to the basics.

“Sleep, water, walking—those are my big rocks,” she said. “Supplements and protocols are the little rocks. If your big rocks aren’t in place, the little ones won’t matter.”

She also encouraged slowing down during meals, noting that many HS patients struggle with digestion during high-stress periods.

“Chewing your food thoroughly is one of the most overlooked, powerful tools for gut health,” she said. “Don’t underestimate it.”

CHANGING THE CONVERSATION IN THE EXAM ROOM

A recurring theme in the discussion was the harmful way healthcare providers often frame weight and lifestyle in HS care.

Brooks and Curp both stressed the need for provider sensitivity, especially around topics such as weight and smoking.

“Telling someone to just lose weight or quit smoking without support or resources is useless,” Brooks said.

Curp shared practical responses patients can use if weight bias arises during an appointment:

• “Thanks for the input. Now, can you talk to me like I’m thin?”
• “I’ve had HS at this weight and at a smaller weight. What now?”
• “Can we run labs to better understand what’s going on with my body?”

Their advice for clinicians was to focus on reducing inflammation, not just body size and above all, to tell patients, “This is not your fault.”

MENTAL HEALTH, COMMUNITY, AND LIVING WELL WITH HS

Both women spoke candidly about the emotional toll of HS, including how it affects relationships, intimacy, clothing choices, and even the ability to leave the house.

“I was that person canceling trips and staying home because I was afraid of flaring,” Curp said. “HS paralyzed me for years.”

The turning point was joining a community. Connecting with other HS warriors, sharing stories, and building friendships changed everything.

“Even an hour in a room with other people who get it is life-changing,” Curp said. “Support is therapeutic.”

Brooks echoed the sentiment: “You see others showing up and living full lives, and you think, ‘Wait, I can do that too.’ That’s the power of community,” she said.

To close the panel, Brooks asked Curp, “What does living well with HS mean to you?”

Curp’s answer was simple but profound: “It means knowing you’re worth it. You’re worth asking for the extra time at your appointment, the cushion for your chair, the water, the help. You can have a beautiful, thriving life with HS.”