Hidradenitis Suppurativa Myth Busters
Written by Helen Bui and medically reviewed by Chris Sayed, MD and Tara Jaleel, MD
Hidradenitis Suppurativa is not a rare disease
The prevalence of HS ranges from 0.1 to 2% of the US population.1 Since HS is often out of sight and not talked about it may seem like it is uncommon, but you’ve almost certainly met other people with HS even if you don’t realize it. HS can make some people feel isolated, but you’re not alone and there is an active community of people with HS raising awareness and providing support.
Hidradenitis Suppurativa is not caused by something you have done
HS is very complex and its cause is unclear.2 While we understand that HS involves inflammation of the hair follicles, there are many possible factors that contribute. Just like with other inflammatory conditions such as rheumatoid arthritis, HS can often run in families and there is not always a trigger that can be identified.3 Just like you wouldn’t blame yourself if you had rheumatoid arthritis, you shouldn’t blame yourself for HS!
Hidradenitis Suppurativa is not an infection
Infections are caused by harmful organisms that should not typically be on your body and can spread from person to person. In HS there is likely an imbalance of one’s skin microbiome where there’s an abnormal combination of normal skin bacteria.4 Although the presence of these bacteria may play a role in triggering more inflammation, it does not necessarily indicate an infection.
Hidradenitis Suppurativa is not curable at this time, but there are treatments available
Treating HS can be difficult and therapeutic guidelines cannot guarantee success, but can often lead to major improvements. However, it is important to have a dermatologist or other providers familiar with HS to provide an individualized treatment plan involving topical and systemic medical treatment, antibiotics, lasers, surgical procedures, and/or inclusion into clinical trials. While it is not curable, treatment can offer significant benefit in decreasing flares and disease progression. In most cases, a multimodal treatment approach may be needed and should be individualized to each person based on specific risk factors.
Hidradenitis Suppurativa is not contagious
There is an almost 7-year delay in obtaining the diagnosis of HS on average based on several studies. Initially, the lesions of HS may be misdiagnosed by health care providers as an infection such as staph or sexually transmitted infections. It is often challenging to differentiate the presentation from an infection in an acute setting such as emergency room/urgent care. The chronicity and distribution of disease are good clues to making the diagnosis. However, HS is not transmitted through skin, airborne, or sexual contact. For these reasons, it is important to spread HS awareness among healthcare providers to help accurately diagnose and treat HS symptoms.
Hidradenitis Suppurativa is not caused by poor hygiene
While the cause of HS is still unclear, it’s clear that hygiene is not the culprit. There are many possible genetic and environmental factors such as an over-active immune system, hormonal imbalance, genetics and smoking that play a role in the disease.5 For these reasons, it’s important to spread HS awareness and dismantle stigmas accompanying the disease.
- Alikhan A, Sayed C, Alavi A, et al. North American clinical management guidelines for hidradenitis suppurativa: A publication from the United States and Canadian Hidradenitis Suppurativa Foundations: Part I: Diagnosis, evaluation, and the use of complementary and procedural management. J Am Acad Dermatol. 2019;81(1):76-90.
- Cartron A, Driscoll MS. Comorbidities of hidradenitis suppurativa: A review of the literature. Int J Womens Dermatol. 2019;5(5):330-4.
- Vekic DA, Frew JW, Woods J, et al. Adopting the orphan: The importance of recognising hidradenitis suppurativa as a systemic auto-inflammatory disease. Australas J Dermatol. 2016;57(1):69-70.
- Prens E, Deckers I. Pathophysiology of hidradenitis suppurativa: An update. J Am Acad Dermatol. 2015;73(5 Suppl 1):S8-11.
- Ring HC, Thorsen J, Saunte DM, et al. The Follicular Skin Microbiome in Patients With Hidradenitis Suppurativa and Healthy Controls. JAMA Dermatol. 2017;153(9):897-905.
About the Author: Helen Bui, born and raised in Charlotte, NC, is a 4th year medical student at the University of North Carolina School of Medicine. She is completing her year-long research fellowship in hidradenitis suppurativa with Dr. Christopher Sayed and plans on applying for dermatology residency during the Fall of 2021.