For more than two decades, Michigan State University alumna Dani Lamb has battled the challenges of hidradenitis suppurativa (HS), a rare and often misunderstood chronic skin condition. Diagnosed as a freshman in college, she initially mistook the symptoms for an ingrown hair. "At first, I thought it was just a hair bump, but it got bigger and more painful," she recalled. "I kept trying to find a head to pop it, but nothing was working."
A Difficult Diagnosis
The discomfort soon escalated. "It got to the point where I couldn’t put my arm down because of the pain," she explained.
Seeking medical attention, she visited the campus health center. After an examination and a series of tests, doctors diagnosed her with hidradenitis suppurativa. This chronic inflammatory skin disease causes painful lumps and abscesses in areas where skin rubs together.
"I was relieved to have an answer finally," she said. "Doctors told me it was just an ingrown hair for years, but this was much more serious."
Managing Life with HS
Since her diagnosis, Dani has adapted her lifestyle to manage outbreaks. "I’ve learned what triggers my flare-ups, and I do my best to minimize them," she said. "Shaving is a major trigger for me, so I haven’t used a razor in over 22 years. I also avoid tight clothing and use gentle cleansers without alcohol or parabens."
Despite these precautions, the condition remains unpredictable. "Even with the best skincare routine, I still get outbreaks," she admitted. "Sometimes they burst and drain independently, and other times require medical attention. Getting an appointment with a dermatologist can take months, which makes managing this even harder."
Her godbrother has an even more severe form of HS, classified as stage four. "He’s had 167 surgeries to remove abscesses before they could become cancerous," she shared. "Compared to him, my case is milder, but it’s still a daily struggle."
The Emotional Toll of HS
Beyond the physical pain, HS can be emotionally isolating. "Outbreaks often happen in intimate areas, which makes people reluctant to talk about it," she explained. "You don’t want to feel like you’re overreacting, but simultaneously, it’s painful and limiting."
During severe flare-ups, even simple activities become difficult. "Going out to eat, dancing, bowling—it all feels impossible when you’re in pain," she said. "It’s hard to explain to people who don’t have HS."
She leans on faith, family, and therapy to manage the emotional toll of living with a rare disease. "Mental health care is essential for me," she said. "Therapy helps me navigate the emotional toll of HS. I highly recommend it to anyone going through a chronic illness."
A Second Battle: Breast Cancer and HS
In 2024, Dani faced another life-altering diagnosis—breast cancer. "It was a shock, but I knew something wasn’t right with my body and caught it early," she said. "I’m so grateful I listened to my instincts and got checked."
The timing was challenging as she was experiencing one of her worst HS outbreaks. "I had an abscess incised right before my breast cancer surgery, and it kept reopening. Normally, the HS wounds bother me, but the cancer treatment put things in perspective. I had to focus on the bigger battle,” Dani said.
Advocacy and Advice
Dani participates in awareness campaigns and shares her story to educate others about the condition—emphasizing the importance of community. "I’ve found support through online groups, and it’s been life-changing. HS is more common than people realize, and we need to raise awareness so others don’t feel alone,” Dani said.
"For years, there was little information about HS," she added. "Now, I see commercials for medications and more doctors recognizing the condition, which is progress. But many people still don’t know what HS is or mistake it for something minor."
Dani’s advice for others dealing with HS includes:
"Hidradenitis suppurativa is an ongoing battle, but it doesn’t define me," Dani said. "By sharing my story, I hope to help others feel less alone and encourage more people to seek diagnosis and treatment."
