Hidradenitis Suppurativa: A Hidden Burden Under the Skin

Many women around the world suffer from boils that are often mistaken for ingrown hairs, acne, or infections. This understudied condition sneaks up on so many people without the knowledge to manage it. One in one hundred people in the United States are affected by Hidradenitis Suppurativa, once a mystery condition that is now being more researched (Jfri et al 2021). 

What is Hidradenitis Suppurativa?

Hidradenitis suppurativa (HS), also known as acne inversa, is a chronic inflammatory skin condition that affects hair follicles in areas with sweat glands and where skin rubs together. Although there is no cure for this condition yet, symptoms can be managed with treatment to prevent further boils and scars (Cleveland Clinic 2022). 

The Hurley clinical staging system classifies HS into 3 stages of severity (Wieczorek 2018):

• Stage I: Formation of abscess, which is a painful collection of pus (white blood cells, blood, keratin debris, and bacteria)

• Stage II: Recurrent abscesses with some tunnels (channels between abscesses from Stage I under the skin) and scarring 

• Stage III: Widespread, interconnected tunnels and multiple abscesses in the entire area

These stages allow distinguishing between regular boils and HS. Regular boils heal and go away; however, with HS these abscesses come back and eventually form tunnels.

Symptoms include painful nodules (firm lumps beneath the skin), abscesses, scarring over time, and they may flare-up before a menstrual cycle.

In women, these abscesses can be seen forming in (Cleveland Clinic 2022):

• Armpits

• Anus

• Buttocks

• Crease under breasts

• Genitals

• Inner thighs

• Nape of the neck

• Waist

What are the current treatments?

As of now, treatments work to reduce inflammation and recurrence, however, abscesses may recur in severe cases. 

Stage I: Local treatments are prescribed (Wieczorek 2018).

• Topical clindamycin: applied directly to the skin or specific lesions to reduce bacteria and lesions

• Intralesional corticosteroid injections: Steroid injection to reduce swelling, pain and inflammation

• Punch debridement: minor procedure to remove small, inflamed lesion to prevent further spreading

• Oral tetracyclines (when HS is more persistent): antibiotic to reduce inflammation and bacterial growth throughout the body

Stage II:

• Oral tetracyclines are prescribed up to 4 months, and if this is not effective, a combination of the antibiotics, clindamycin and rifampin are prescribed (Wieczorek 2018). 

Stage III: Biological treatments, made from living sources, such as cells, proteins, and microorganisms, and surgical procedures (Wieczorek 2018).

• Adalimumab: can be injected at home to reduce pain, inflammation, and the number of lesions

• Infliximab: administered through IV infusion to help with severe cases

• Lesions can also be surgically removed at this stage.

Who is most at risk for HS?

Women are approximately twice as likely as men to develop HS due to hormonal changes that involve androgens (testosterone and DHT), and this means that puberty, menstrual cycle, and pregnancy may trigger or worsen symptoms (Wieczorek 2018). Other risk factors include (Cleveland Clinic 2022):

• Excessive hair growth

• Family history/ genetics

• Smoking

• Obesity

• PCOS

A Psychological Perspective

Artwork by Shea Davis

This is not only a skin condition, but it affects both the body and the mind. There are correlations between chronic inflammatory skin diseases and the central nervous system (CNS) due to their embryogenic origins (Caccavale 2023). Skin and the CNS both emerge when the ectoderm, which is the outermost layer of the embryo, differentiates into one that forms the epidermis (outermost layer of skin) and another that forms the neural tube (develop into the brain and spinal cord). 

Given this biological link, individuals with HS are more at risk of facing mental health challenges. Depression and anxiety are common among 20-30% of diagnosed HS patients (Caccavale 2023), and depression is significantly more common in these patients compared to other dermatological conditions (Onderdijk et al 2013). Some patients fall into substance abuse primarily due to the pain behind HS. It is recommended that patients consult pain specialists to avoid the overuse of painkillers. Although less than depression, anxiety and substance abuse, bipolar disorder and schizophrenia are more common in HS patients than non-HS patients (Caccavale 2023). 

Beyond these clinical diagnoses, HS can significantly impact someone’s emotional well-being. Chronic pain, scarring, and unpredictable flare-ups can contribute to feeling embarrassed, low self-esteem, social withdrawal, and this decreases the overall quality of life. The fear of judgement may further intense feelings of isolation and distress. Because of this cycle of physical and psychological burdens that reinforce each other, it is important that we, as a community, raise awareness to dissipate the stigma around this painful condition and create a more supportive environment for those affected.

Research Gaps in HS

Although research on HS has increased in the past few years, there is not yet proper treatment for this disease. One of the main reasons is the lack of understanding behind the genetic predisposition or how hormones play a role. There are numerous genetic variations involved, but they are yet to be identified. All of these factors also play a role in diagnosis, where many HS patients get diagnosed very late into the condition and many are left undiagnosed when it gets mistaken for boils. Recent research is also moving towards finding associations between HS and diet, immune system, and ethnicity as well.

Citations

Caccavale, Stefano et al. “Hidradenitis Suppurativa Burdens on Mental Health: A Literature Review of Associated Psychiatric Disorders and Their Pathogenesis.” Life (Basel, Switzerland) vol. 13,1 189. 9 Jan. 2023, doi:10.3390/life13010189

Cleveland Clinic. (2022, December 20). Hidradenitis Suppurative. https://my.clevelandclinic.org/health/diseases/17716-hidradenitis-suppurativa

Jfri A, Nassim D, O’Brien E, Gulliver W, Nikolakis G, Zouboulis CC. Prevalence of Hidradenitis Suppurativa: A Systematic Review and Meta-regression Analysis. JAMA Dermatol. 2021;157(8):924–931. doi:10.1001/jamadermatol.2021.1677

Onderdijk, A J et al. “Depression in patients with hidradenitis suppurativa.” Journal of the European Academy of Dermatology and Venereology : JEADV vol. 27,4 (2013): 473-8. doi:10.1111/j.1468-3083.2012.04468.x

Wieczorek, Marta, and Irena Walecka. “Hidradenitis suppurativa - known and unknown disease.” Reumatologia vol. 56,6 (2018): 337-339. doi:10.5114/reum.2018.80709