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“I never knew normal life,” Justus Bell said, holding back tears.

As a girl growing up in Nelson County, she began navigating an uncommon and underdiagnosed chronic skin disease.

People with hidradenitis suppurativa, or HS, develop deep, painful bumps under the skin, along with swelling and recurring flare-ups.

“My life was always bandage or dressing changes, follow-up appointments with dermatology or plastic surgery, or my primary care doctor trying this antibiotic or that antibiotic, this topical, that topical,” she said. “I mean, anything you can name, I probably tried to help my HS.”

At UVA Health, she experienced a salve that made a life-changing difference – not only improving her health, but the health of others, because she decided to become a nurse.

Diagnosed at 12

“I think when I first initially got diagnosed, especially as a young teenage female, it was very hard for me,” she said, pausing to hold off tears. “I never felt normal.

“It took me a lot of learning and realizing with not only myself, but my caregivers and my family and support system, that even though I will have to go through this for the rest of my life, that I still am normal. … Life goes on.”

The 27-year-old has undergone seven surgeries, starting at age 12.

As Bell recounted the first one, she wept. “When I had that surgery, I had to learn how to walk with a walker, and being 12, that was like the worst thing I ever had to go through,” she said. Two of her nurses gave her the strength to power through. She could not recall when the surgery was, but she remembered their names, Cheryl and Jessica. “I remember them being so comforting and caring for me … as if I were their own kid. They gave me something positive to look forward to,” she said – including becoming a nurse herself.

A mysterious disease

Bell is a patient at UVA Health’s . It is the only one in the state and draws patients from across the commonwealth. “It’s just absolutely exploded,” Dr. Richard Flowers, the clinic’s director, said. “The need really is overwhelming and growing. We’re seeing many, many new patients every week.” Historically, he said, there is a seven- to 10-year delay between the onset of symptoms and a diagnosis

“I think the people that have been out there, they just haven’t been getting plugged in,” he said. “They’ve been going to the ER, being told that they have an infection, or they’ve just been suffering in silence at home.”

The youngest HS patient Flowers has seen has been 8 or 9. “But usually like, 12, 13, 14 is pretty typical,” he said.

Flowers says HS has historically been a challenging disease with few effective treatments. “Only recently have we started to understand how to treat it, the importance of early diagnosis and treatment, how to manage it surgically. So I think the tide is turning,” he said.

Relief

Bell’s miracle drug is Remicade. She has been getting monthly infusions for about three years. “It has really made a drastic turn in my life. I’m able to wear things I was never able to wear,” she said. “It’s been something that has been so life-changing for me. I tell people all the time those are actually my favorite doctor’s appointments.”