Delayed HS Diagnosis: Misconceptions, Stigma, and Suicide Risk

In "Delayed HS Diagnosis: Misconceptions, Stigma, and Suicide Risk," our expert confronts the human cost of waiting years for an answer.

Dr. Lev-Tov begins with the reported diagnostic delay in HS of 7 to 10 years. He asks the audience to consider whether they would accept this in any other condition. Would anyone accept pneumonia or cancer taking seven years to diagnose?

Patients move from provider to provider and no one names the problem. Dr. Lev-Tov says he sometimes feels patients are referred to him because telling them the diagnosis entails a long story, and clinicians find it frustrating when they feel they lack a treatment.

He urges clinicians who make the diagnosis to tell the patient. Putting a name on a problem patients believed was their fault can bring enormous relief, and he says clinicians can break the cycle themselves.

Without a diagnosis, patients absorb misconceptions. First they believe they are dirty, so they clean themselves even more, which will not work and which he calls cruel. Second, they believe HS is a sexually transmitted disease. Fearing they will infect others, they withdraw further, deepening social isolation. They also believe it is their fault, and these beliefs compound into emotional breakdown.

Dr. Lev-Tov then addresses suicide, carefully and without wanting to sound bombastic. By sheer numbers the cases are not high. Even so, patients with HS have disproportionately more suicidal ideation and completed suicides than the general population and than patients with psoriasis.

He notes that the only disease in the available data with a similar disproportionate impact is melanoma. Because HS is far more common than melanoma, he says this shows how severe the disease can be, and how a delayed diagnosis can rarely culminate in a suicide attempt.

In "HS Treatment Window of Opportunity: Moderate Disease and Early Biologic Therapy," the panel examines the window of opportunity, and why catching HS earlier changes the odds of remission.