Hidradenitis suppurativa (HS) can be a debilitating inflammatory skin disease that is a mystery to many—except to dermatologists and perhaps those patients who’ve been treated for the condition for a long time.
“It is one of my jobs as a dermatologist to educate people about HS and put some of these myths and misconceptions to rest,” says Hirshel Kahn, MD, a dermatologist at The Mount Sinai Hospital. Here are five common myths about HS that derms (and longtime patients) wish you would stop believing.
Myth: Hidradenitis suppurativa is rare. Hidradenitis suppurativa is more common than previously thought, just under-recognized. It affects an estimated 1 to 4% of the worldwide population—mostly women, African Americans, late adolescents, and young adults. It’s also common in people who have a family history of HS. “One in three people who have hidradenitis suppurativa have a blood relative who has it,” says Dr. Kahn.
Myth: Hidradenitis suppurativa is contagious. Hidradenitis suppurativa wounds may look unpleasant, but they are in no way spread from person to person, says Dr. Kahn. The exact cause of HS in not clear, but experts believe that immune system, hormones, and family history play a major role.
Myth: Hidradenitis suppurativa is an STD. Since hidradenitis suppurativa can often appear in the groin area, specifically on the genitals, anus, and thighs, people are often concerned that their partners may think they have a sexually transmitted disease, but this just isn’t true, says Dr. Kahn.
Myth: Hidradenitis suppurativa is caused by poor hygiene. The underlying cause of hidradenitis suppurativa is not known in most cases, but derms do know it’s not because you’re not washing properly. “We do know for sure it’s not in any way related to poor hygiene,” says Dr. Kahn. HS develops when hair follicles become blocked and inflamed, which could be due to the immune system overreacting or, because it occurs after puberty, fluctuations in hormone levels. HS also tends to be more common in those who smoke or are overweight. These lifestyle factors, however, are only triggers, not causes.
Myth: Hidradenitis suppurativa can’t be treated. “The biggest myth is that there is nothing that can be done to make hidradenitis suppurativa better,” says Dr. Kahn. “There are so many things that can be done, both on the part of the patient, and in terms of the patient-doctor relationship.” Losing weight, quitting smoking if you smoke, and caring for your skin properly can make a significant difference in the severity of the condition and your quality of life. “Anything from daily wound care at home to taking medications to using more aggressive injectable treatments will all have a significant impact on this condition,” says Dr. Kahn. Be open and honest with your dermatologist about your needs and lifestyle, so he or she can help you find the best hidradenitis suppurativa treatment.