HS Patient Journey: Clinical, Emotional, and Economic Burden

This episode, "HS Patient Journey: Clinical, Emotional, and Economic Burden," features Dr. Lev-Tov painting a picture of what the disease looks like from the patient's side.

Dr. Lev-Tov frames the patient experience through a hypothetical patient named Jessica, a 12- or 13-year-old with a bump in the groin area. She is embarrassed and tells no one, and within days the lesion becomes a painful abscess. She begins to believe she is dirty and has done something wrong, and that shame stays with her.

Her hypothetical parents take her to urgent care, where the abscess is lanced and she receives antibiotics. It improves, which Dr. Lev-Tov calls the tragedy of the situation. Everyone concludes it was a simple infection. Months later a new lesion appears in her armpit, and this time she goes to the emergency room.

Her parents ask why she doesn't clean herself better, so she scrubs daily. The cycle continues through urgent care, the emergency room, and primary care, and nobody connects the dots. Left untreated, nodules and abscesses can progress to tunnels, drainage, and pain.

Dr. Lev-Tov says HS derails a life. It starts in the teenage years and can explode in the early 20s, when college, job interviews, and relationships are at stake. He cites documented sexual dysfunction in both males and females, with evidence that partners are affected too.

The economic burden is substantial for patients, who may attend a lesser college or miss work to change clothes. The system also pays through fragmented care, expensive emergency visits, admissions, multiple surgeries, and lost workdays. Dr. Lev-Tov concludes that HS affects patients clinically, emotionally, and economically, and the cost reaches the healthcare system and society as a whole.

Up next, in "HS Diagnosis: Recognizing Typical Lesions, Locations, and Chronicity," Dr. Lev-Tov explains how misdiagnosis happens and offers a simple framework for recognizing HS in practice.