Stop the Stigma: Learning About HS

While originally thought to be a rare disease, hidradenitis suppurativa (HS) is now thought to affect 1-2% of the U.S. population. The underrepresentation of those suffering from this chronic inflammatory skin disease may stem largely from the stigmas surrounding HS.

While studies and research are helping us learn more about this immune disease every day, there’s still a lot we don’t understand about hidradenitis suppurativa. Many Americans hesitate to speak up or voice their symptoms out of fear, shame, and guilt that they are to blame for a painful skin condition that is beyond their control.

Unfortunately, HS is also frequently misdiagnosed as acne, folliculitis, a skin infection, or a sexually transmitted infection. As you can imagine, this often adds to a patient’s sense of isolation, embarrassment, and reluctance to speak up about the pain they’re experiencing as a result of hidradenitis suppurativa. In many instances, it can prevent them from receiving the care, compassion, and treatment they deserve.

5 Myths About Hidradenitis Suppurativa

If you suffer from HS, you’re not alone. Many patients affected by hidradenitis suppurativa hesitate to tell a doctor or loved one about their suffering as a result of the stigma surrounding it.

It’s important to understand that HS is not your fault and there are treatment options available to improve your quality of life. Keep reading to learn 5 myths about hidradenitis suppurativa.

Myth #1: HS is contagious.

Hidradenitis suppurativa is considered an immune disease, meaning that it is not contagious.

HS is a chronic inflammatory skin condition caused by an overactive immune system. The body of an HS patient produces an overabundance of keratin, which blocks hair follicles and can lead to a buildup of sweat and bacteria, resulting in painful lesions, abscesses, and boil-like nodules.

It’s important to understand that hidradenitis suppurativa cannot be spread from one person to another.

Myth #2: HS is a sexually transmitted infection.

For doctors who lack experience with hidradenitis suppurativa, one of the first potential explanations that may come to mind is a sexually transmitted infection (STI). Sadly, many patients who suffer from HS breakouts in the groin or genital area are initially misdiagnosed, which often serves to strengthen the stigma and a person’s shame about their condition.

This is even more troublesome considering that many people contract HS during or after puberty, making sexually transmitted infections a touchy and even accusatory topic for some adolescents who suffer from painful HS flareups.

Regardless of where a patient’s HS flareups occur, crucial to understand that HS is not a sexually transmitted disease, nor is it contagious. A qualified dermatologist who specializes in HS will be able to recognize the characteristics of HS breakouts with a trained eye and recommend the proper route of treatment.

Myth #3: HS is a result of poor hygiene.

While certain factors may trigger HS flareups (such as sweat, friction, overheating, or excessive exercise), it is not caused by poor hygiene or washing habits.

HS is not a preventable condition, but a chronic inflammatory condition. While it hasn’t been formally ruled out as an autoimmune disease (such as lupus or multiple sclerosis), the medical community currently considers HS an immune disease, meaning that it’s the product of an overactive immune system. HS patients and their families need to understand that the condition is not their fault and isn't indicative of poor hygiene or washing.

Myth #4: HS can’t be treated.

While there is no cure for HS at this time, there are various treatment options available to patients. Ongoing studies and research are telling us more about hidradenitis suppurativa every day and shedding more light on potential options for patients to reduce flareups and improve their quality of life.

Today, treatment options include (but aren’t limited to):

Lotions and washes
Topical medicines
Systemic medications
Surgery and procedures

Keep in mind that it’s important to speak with your doctor to determine the best treatment plan tailored to your specific needs, as preferred routes can vary based on the severity and duration of the HS.

Myth #5: HS is just acne.

While the nickname “acne inversa” may suggest otherwise, it’s important to understand that hidradenitis suppurativa is not a form of acne.

While symptoms of HS can resemble other conditions, such as acne, boils, or herpes, hidradenitis suppurativa is a chronic skin condition that causes painful abscesses, boils, nodules, and lesions in the folds of the skin. Such symptoms are caused as hair follicles become blocked due to the body’s overproduction of keratin, which can lead to a buildup of sweat and bacteria.

HS lesions (“flareups”) will go through a process of growing, draining/bursting, and scarring, often leading to tunneling and accrued scar tissue in the skin that can prevent movement over time.

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