The need for greater awareness and multidisciplinary management for Hidradenitis Suppurativa (HS)

Note from Admin: One of the things that we often see and hear in patient discussions is questioning why we don’t have a larger supply of HS knowledgeable medical professionals. Slowly but surely, that supply is increasing. Here’s what a current medical student has to say about his journey to learning more about HS.

I went to the emergency room a few times; they drained the boil, but it came back.

The doctors thought it was an infection.”

For years, nobody could tell me what I had.

These statements echo the experiences of many Hidradenitis Suppurativa patients I have worked with during my research fellowship at UNC. HS is frequently misdiagnosed as simple skin infections, hair follicle inflammation, boils, or even sexually transmitted diseases — especially in the emergency and primary care setting. This is because symptoms may be intermittent and the presence of symptoms in covered areas of skin such as groin and underarms make it challenging for clinicians to grasp the entire clinical picture and spectrum of symptoms. This misdiagnosis leads to treatment with simple drainage, or antibiotics and the symptoms inevitably recur.

Studies have shown that the average delay in diagnosis of HS encompasses multiple years, leaving patients to grapple with debilitating pain, drainage, or odor. Without critical early intervention, the disease often progresses, translating to missed school or work, social isolation, and severe psychological distress. Therefore, there is a profound need for greater awareness of the prevalence, symptoms, and impact of HS on patients, especially among general clinicians. Medical curricula should emphasize more comprehensive education regarding HS and residents and physicians should be provided more training opportunities on how to diagnose and manage HS. Clinicians should consider HS if patients present with recurrent boils and cysts not resolved with antibiotics or endorse a strong family history of these symptoms. Finally, the community also plays an important role in supporting patients living with HS. Patient support groups are at the forefront of this initiative and have worked tirelessly to create a true sense of community and belonging for HS patients, their caregivers, and family members.

Enhancing clinician knowledge and comfort with managing HS and creating greater awareness of the lived experiences of HS patients within the community is the foundation for developing the multidisciplinary approach needed for the effective management of HS. A physician should not only consider the patient’s skin manifestations of HS, but their pain, associated health conditions, mental health, and current support systems. Hence, the team should include dermatologists, primary care providers, surgeons, pain specialists, mental health providers, caregivers, and patient advocates. This approach ensures a thorough evaluation of the patient’s condition, addressing both the physical and psychological aspects of this often overlooked and misunderstood condition.

Rayad Shams, Medical Student and HS Research Fellow