From Tunnels to Treatment: Advancing HS Management - Episode 1
HS Diagnostic Delay: Why It Persists and the Psychosocial Burden
Delayed recognition of HS costs patients time, tissue, and quality of life. The panel examines why episodic flares and atypical presentations are missed and the shame and isolation that follow.
Welcome back to another HCPLive Peer Exchange series. In "HS Diagnostic Delay: Why It Persists and the Psychosocial Burden," moderator Martina Porter, MD is joined by Ali Shahbaz, MD, FAAD, FRCPC and Michelle Tarbox, MD to open the series on hidradenitis suppurativa.
Moderator Dr. Porter opens by noting that HS is often associated with a substantial diagnostic delay, in some studies up to 10 years, and asks why the disease remains under-recognized. The panel points first to its episodic course, with flares alternating with periods of remission. Patients frequently present to emergency or urgent care settings, where each flare is treated as an isolated abscess and the underlying pattern goes unrecognized. The affected areas are also private, and patients may understandably feel uncomfortable discussing them with a new physician, which places much of the responsibility on clinicians to be well educated about the disease.
The panel frames the cost of delay in three parts: lost time and productivity at work, lost functional tissue that is exchanged for tunnels and scarring, and lost ability to participate fully in life. Presentation also varies. Patients seen during an acute flare offer the best chance of a correct diagnosis, while atypical presentations in areas patients have not yet felt comfortable sharing can require several follow-up visits. Earlier-onset patients who do not fit the classic picture are especially likely to go unrecognized.
The discussion then turns to burdens beyond visible lesions. The panel describes shame as an unseen weight that patients carry into the office, with the burden often falling on them to seek a diagnosis. Pain, malodor, and drainage add a second layer of impact. HS can also be isolating, particularly when patients do not realize the lesions are not contagious and withdraw from the people they care about. The panel links this to lost relationships, missed work, and missed life events, along with the constant anxiety of living with the disease.
Our next episode, "HS Pathophysiology: Follicular Occlusion, Biofilm, and Innate Inflammation," turns to the inflammatory and microbial mechanisms that make HS tunnels so destructive.
