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Statistics: Who Gets Hidradenitis Suppurativa?

Hidradenitis suppurativa, or HS, is a chronic inflammatory skin disease. The pain, appearance, and odor can have serious effects on quality of life.1

How common is HS?

The exact number of people with HS is not known. Estimates have come from health insurance claims, medical records, and surveys of people with HS. Results vary widely.2

The disease is not common. Estimates in the United States and Europe show that about 1 out of every 100 people has HS. However, HS is not rare. Some estimates show that as many as 4 people out of every 100 people have the condition. In the United States, that would be about 13 million people, or about the population of Pennsylvania.2

Research shows that there are about 118,000 healthcare visits by people with HS in the United States each year. However, some of these could be more than 1 visit by the same person.3

How old are people with HS?

About 93 percent of people with HS are between the ages of 18 and 64.3

Only 2.2 percent of people with HS are younger than 17 years old. If you are younger than 17 when HS begins, you probably have a family history of HS.2,4

The largest group of people with an HS diagnosis are 30 to 39 years old. In 2019, researchers in the United and Canada reported 2 peaks for the onset of symptoms:2,5

  • An early-onset group said HS symptoms began in their mid-teen years
  • A late-onset group said HS symptoms began in their mid-40s

After symptoms begin, correct diagnosis may take up to 7 years.6

How is gender linked?

HS is more common in women. Women with HS outnumber men with HS by nearly 3 to 1. On average, women also are younger than men when they first have symptoms of HS.2,5

How are race and ethnicity linked?

In the United States, Black women ages 40 and under have the highest risk of HS.2

Black people are 3 times more likely to have HS than white people. Biracial (Black and white) people are twice as likely to have HS than white people.2

Hispanics are generally younger than Black or white people when they first have symptoms of HS.5

Besides a greater risk of having HS, Black, and biracial (Black and white) have more severe HS symptoms than white people.7

What about socioeconomic status?

Research has found a connection between low socioeconomic status and HS. People with low education, income, and employment levels often have less access to healthcare. They may have an even longer delay in diagnosis and treatment than others.8

Pain and odor cause many people with HS to lose up to 7 days of work a year. Missing this many days of work can reduce job productivity and cause some people to lose their jobs. Loss of income may sometimes cause low socioeconomic status.9

Why are statistics important?

Because HS now takes so long to be diagnosed, more research is needed to find out how many people have undiagnosed HS.2

Knowing who is most likely to have HS may help doctors diagnose HS more quickly. Earlier treatment can reduce pain and may prevent more severe disease with scars and disability.3

Written by: Ina Fried | Last reviewed: December 2020
  1. Mac Mahon J, Kirthi S, Byrne N, et al. An update on health-related quality of life and patient-reported outcomes in hidradenitis suppurativa. Patient Relat Outcome Meas. 2020;11:21-26. http://doi.org/10.2147/PROM.S174299.
  2. Garg A, Kirby JS, Lavian J, et al. Sex- and age-adjusted population analysis of prevalence estimates for hidradenitis suppurativa in the United States. JAMA Dermatol. 2017 Aug;153:760-764. doi:10.1001/jamadermatol.2017.0201.
  3. McMillan K. Hidradenitis suppurativa: number of diagnosed patients, demographic characteristics, and treatment patterns in the United States. Am J Epidemiol. 2014;179(12):1477-1483. doi:10.1093/aje/kwu078.
  4. Dessinioti C, Tzanetakou V, Zisimou C, et al. A retrospective study of the characteristics of patients with early-onset compared to adult-onset hidradenitis suppurativa. Int J Dermatol. 2018 Jun;57(6):687-691. doi:10.1111/ijd.13985. Epub 2018 Mar 31.
  5. Naik HB, Paul M, Cohen SR, et al. Distribution of self-reported hidradenitis suppurativa age at onset. JAMA Dermatol. 2019 Jun 5;155(8):971-973. doi:10.1001/jamadermatol.2019.0478.
  6. Napolitano M, Megna M, Timoshchuk EA, et al. Hidradenitis suppurativa: from pathogenesis to diagnosis and treatment. Clin Cosmet Investig Dermatol. 2017;10:105‐115.
  7. Lee DE, Clark AK, Shi VY. Hidradenitis suppurativa: disease burden and etiology in skin of color. Dermatology 2017;233:456-461. https://doi.org/10.1159/000486741.
  8. Wertenteil S, Strunk A, Garg A. Association of low socioeconomic status with hidradenitis suppurativa in the United States. JAMA Dermatol. 2018;54(9):1086-1088. Available at https://jamanetwork.com/journals/jamadermatology/fullarticle/2688584.
  9. Margesson LJ, Danby FW. Hidradenitis suppurativa. Best Pract Res Clin Obstet Gynaecol. 2014 Oct;28:1013-1027. https://doi.org/10.1016/j.bpobgyn.2014.07.012.