Overcoming Barriers to Delayed Diagnosis of HS

In this episode, ‘Overcoming Barriers to Delayed Diagnosis of HS,’ the expert dermatologists address one of the most troubling realities in HS care, that patients wait an average of 10 years to receive a correct diagnosis. Dr. Resnik attributes much of this delay to a fundamental lack of disease awareness, describing HS as "the worst disease no one's ever heard of," and notes that while progress has been made through patient advocacy groups and the efforts of the HS Foundation, widespread recognition remains a significant challenge. He emphasizes that frontline providers including pediatricians, OB-GYNs, urologists, family practice physicians, and general surgeons must learn to recognize HS rather than dismissing lesions as isolated abscesses. For experienced dermatologists, HS is often a doorway diagnosis, immediately recognizable upon visual inspection, yet that same recognition does not translate across other specialties.

Both physicians highlight the growing role of patient self-advocacy, with Dr. Hsiao noting an increase in patients who self-refer after encountering information about HS on social media, underscoring the power of public education in driving earlier care-seeking behavior. Dr. Resnik shares a practical screening strategy he has employed for the past five years, routinely asking new acne patients about lesions in the axillae, groin, and buttocks. He stresses that simply asking the question plants a seed for patients who may have given up after years of inadequate care. Dr. Hsiao reinforces this approach, adding that routine skin checks can also reveal subtle signs of early HS, presenting an important opportunity for timely intervention given that the condition affects approximately 1 in 100 people globally.

The next episode in this series, ‘Addressing HS Misconceptions,’ features the panelists advancing their conversation on HS and focusing on the most common misconceptions surrounding HS, from false beliefs about poor hygiene and infection to assumptions about which patients can develop the disease, emphasizing that these myths contribute directly to diagnostic delays and patient harm.