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Creating a Community for Those With Hidradenitis Suppurativa

Hidradenitis suppurativa is a skin condition that causes large, often painful, pimple-like blemishes to grow on the skin. The rarity of the condition means it takes an average of about seven years for it to be properly diagnosed.

Sara Hayes, vice president of community development for social health network Health Union, talks about the impact of the disease.

Sara-Hayes-Social Health-Network-Health-Union

Sara Hayes

Vice President of Community Development, Social Health Network Health Union

What is HS and what are some of the initial signs patients can look out for?

Hidradenitis suppurativa, which is often abbreviated as HS, is a chronic inflammatory skin disease that was formerly known as acne inversa. In fact, HS often begins with small, pimple-like bumps and may be confused with traditional acne. When those bumps burst, the immune system triggers an inflammatory response. As the condition worsens, bacteria can lead to infections and wounds can lead to scars.

Some of the most common symptoms experienced by people living with HS are pain, lumps or nodules under the skin, drainage, abscesses that form under the skin, scarring, itchiness, sinus tracts under the skin, pus that leaks out and can emit a strong odor, infections, blackheads, boils, and what look like holes in the armpits. These symptoms can surface all over the body, but most commonly in the groin and genital area, armpits, buttocks, thighs, and the chest region.

Misdiagnosis is common for people living with HS, and often discussed by patient advocates and community participants at, one of Health Union’s three-dozen chronic condition-specific online health communities. Among the reasons, symptoms can often be written off as traditional acne, especially when people exhibit symptoms during their teen years. Additionally, there is often a lack of awareness — even among non-dermatologist healthcare providers — about HS and its symptoms. As a result, it can often take years for a correct diagnosis.

In fact, a respondent to Health Union’s “Hidradenitis Suppurativa In America” 2021 survey said, “I had been dealing with HS since I was about 14 and I thought I was the only person with these horrible symptoms. I was misdiagnosed by many doctors until, at age 50, I saw a new dermatologist who took one look and said, ‘you have HS.’ I cried because I could finally put a name to this terrible disease.”

What are some of the causes of HS and who is most affected?

HS typically originates when hair follicles get blocked, causing bumps to form. Those bumps then burst, leading to discharge and a typically strong odor.

Additionally, people living with HS deal with myriad triggers that lead to flares and can contribute to disease progression. Roughly 6 in 10 respondents to Health Union’s “Hidradenitis Suppurativa In America” 2021 survey of 438 people living with HS considered friction or rubbing of clothes, heat, stress, and sweat to be flare triggers, while about half are triggered by hormonal changes and shaving.

Researchers believe genetics might play a role in predisposing people to HS. Common risk factors also include metabolic syndrome, thyroid disease, and joint disease. HS tends to be diagnosed more frequently in women than men, as well as in people who are Black.

People living with HS tend to begin developing symptoms between puberty and age 40. In fact, more than 70 percent of “Hidradenitis Suppurativa In America” 2021 survey respondents were diagnosed before they turned 40.

What are some of the treatment options for HS?

Topical treatments are among the most popular treatment options for people with HS. In fact, 85 percent of “Hidradenitis Suppurativa In America” 2021 survey respondents said they currently use a topical treatment, such as topical antibiotics, topical corticosteroids, and over-the-counter lotions.

Two-thirds of respondents currently use an anti-inflammatory treatment, with a large amount taking over-the-counter pain medications. More than a quarter said they currently use oral antibiotics, while 61 percent previously, but no longer, used one. Only 15 percent said they are currently using a biologic treatment.

Six in 10 respondents said they have had surgery to treat their HS. The most prominent surgery has been incision and drainage of abscesses, with many also undergoing excisions.

Some alternative therapies and treatments are also popular among people with HS. Some popular examples include warm compresses, multivitamins, herbal and nutritional supplements, and tea tree oil.

Despite various treatment options, including medications and surgeries, condition management is often still difficult for people with HS. Only 15 percent of survey respondents said they feel their condition is well-controlled with their current treatment plan, and a little more than a quarter felt confident they’re doing everything necessary to manage their HS.

Is there anything else you’d like our readers to know about HS?

HS can have a significant negative impact on a person’s quality of life. Much of this is associated with the often visible nature of the condition and the false perception of poor hygiene and uncleanliness. People with HS often feel embarrassed and shameful of their skin, despite efforts to treat the condition and its symptoms. As a result, nearly 6 in 10 “Hidradenitis Suppurativa In America” 2021 respondents said they have at some point felt judged or stigmatized for having HS.

More than half of respondents said their pain interferes with their family or social life, and 44 percent said their condition impacts their ability to work. However, one of the most significant areas of quality of life impact tends to be sex and intimacy, likely related to the areas of the body where HS can surface and the body image issues that can result. In fact, 70 percent of respondents said they are less comfortable with sex and intimacy due to their HS, while 69 percent said HS impacts their intimate or sexual relationships. One survey participant noted, “In sexual situations, I have had partners say they are ‘grossed out’ and ask me whether I’m sure it’s not an STI before awkwardly ending things.”

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