Hidradenitis Suppurativa (HS) is a chronic inflammatory skin condition characterized by painful lumps under the skin, often in areas where skin rubs together, such as the armpits, groin, and under the breasts. While it affects millions, it is frequently misunderstood and misdiagnosed. Unfortunately, this is one of many conditions that can be surrounded by myths and misconceptions. Let’s peel back the layers and uncover the real story behind HS, offering clarity and support to those impacted by this condition.

Myth 1: HS is a Rare Disease  

Many believe HS is rare, but it’s quite common and often underdiagnosed. Up to 4% of Canada’s population has HS, ranging from 300,000 to over a million individuals.  

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HS is frequently misdiagnosed as skin infections or ingrown hairs, which can lead to years without proper diagnosis and treatment. 8 out of 10 individuals are misdiagnosed with HS at least once. The average time to diagnosis is 8 years, which means many do not receive the correct treatment in the early stages of the disease.  

Myth 2: HS is Contagious  

HS is not contagious. It is a chronic inflammatory skin condition that does not spread from person to person. HS often starts as small, pea-sized bumps and can progress to larger abscesses that may rupture and leak pus, which may lead some people to believe it is infectious. In reality, this is caused by chronic skin inflammation that has led to tunnel formation under the skin, resulting in fluid drainage from these areas.  

Myth 3: HS is Caused by Poor Hygiene  

HS is not caused by poor hygiene. Over-cleaning and excessive scrubbing can worsen symptoms for some individuals. Scrubbing the skin with loofahs, brushes, or washcloths induces trauma to the skin, which can be a trigger to precipitate flares.  However, using certain skin care products, such as specific antiseptic or antimicrobial washes, can reduce the number of flares and improve symptoms. If you are someone living with HS, it is important to speak with your healthcare practitioner or dermatologist for recommendations on a skincare routine that will work for you. 

 

Myth 4: You Shouldn’t Exercise if You Have HS  

Exercise is one of the most beneficial lifestyle measures for managing HS flares and should not be avoided because of the condition. Exercise can promote circulation, reduce inflammation, and help clear toxins. If sweating worsens your symptoms, try exercising in cooler temperatures or adjusting your routine. This can help minimize discomfort while reaping health benefits from exercise.  

Myth 5: There is No Good Treatment for HS  

While there is no cure for HS, many treatment options are available to manage symptoms, reduce flare-ups, and improve quality of life. Treatments include antibiotics, anti-androgen (hormonal) treatments, biological therapies, and anti-inflammatory medications. Early diagnosis and intervention are important to prevent the progression of the disease, so it is essential to speak with your dermatologist to determine what treatment plan is right for you.  

Myth 6: HS Only Affects the Skin  

HS impacts more than just the skin.  The visible nature of the condition can lead to anxiety, depression, and social withdrawal. Aside from psychological impacts, HS is also associated with other medical conditions like inflammatory arthritis, inflammatory bowel disease, metabolic disorders, and polycystic ovary syndrome (PCOS).  

Myth 7: No One Can Understand What I Am Going Through  

Patients with HS may feel isolated and reluctant to talk about their condition. This can lead to feelings of shame and self-blame. However, if you are a patient with HS, you are not alone in this journey. There are excellent resources available that provide reliable information about HS, such as the Canadian Hidradenitis Suppurativa Foundation.

Many support groups are also available to connect with other individuals experiencing the same symptoms, such as Hidradenitis and Me.  

By debunking these myths, we hope to raise awareness and provide support for those living with HS. If you or someone you know is struggling with HS, contact a healthcare professional for guidance and support.  

References

  1. Goldburg SR, Strober BE, Payette MJ. Hidradenitis suppurativa. Journal of the American Academy of Dermatology. 2020;82(5):1045-1058.

doi:10.1016/j.jaad.2019.08.090

  1. Hidradenitis Suppurativa. Canadian Dermatology Association. Accessed November 25, 2024. https://dermatology.ca/public–patients/diseases–conditions/skinconditions/hidradenitis–suppurativa/
  1. Hidradenitis suppurativa: Pathogenesis, clinical features, and diagnosis – UpToDate. Accessed February 15, 2024.

https://www.uptodate.com/contents/hidradenitis–suppurativa–pathogenesisclinical–features–and–

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  1. Caccavale S, Tancredi V, Boccellino MP, Babino G, Fulgione E, Argenziano G. Hidradenitis Suppurativa Burdens on Mental Health: A Literature Review of Associated Psychiatric Disorders and Their Pathogenesis. Life (Basel).

2023;13(1):189. doi:10.3390/life13010189

  1. Keary E, Hevey D, Tobin AM. A qualitative analysis of psychological distress in hidradenitis suppurativa. Br J Dermatol. 2020;182(2):342-347.

doi:10.1111/bjd.18135

  1. Elzawawi KE, Elmakaty I, Habibullah M, et al. Hidradenitis suppurativa and its association with obesity, smoking, and diabetes mellitus: A systematic review and meta-analysis. Int Wound J. 2024;21(9):e70035. doi:10.1111/iwj.70035

Submitted by: Madeleine Crawford, MS4

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