6 Myths about Hidradenitis Suppurativa

June 1, 2020

MYTH: Hidradenitis Suppurativa is a rare disease.

FACT: HS was once thought to be a rare disease, but now we know that it is quite common. We estimate that 1-2 in 100 people in the United States suffer from Hidradenitis Suppurativa (HS). HS more commonly affects women and minorities.

MYTH: HS is contagious.

FACT: HS is NOT contagious, and it is NOT related to poor hygiene. HS is a inflammatory skin condition that is characterized by painful bumps and abscesses typically in the armpits, groin and buttocks that recur.

Bumps and abscesses can become tunnels under the skin that drain fluid.

Because of its appearance and location, HS may be misdiagnosed as acne, folliculitis (inflammation of the hair root), a skin infection, or a sexually transmitted disease. Unlike these conditions, HS is a chronic condition that does not yet have a cure.

MYTH: HS is a disease that is caused by being overweight and smoking tobacco.

FACT: While we are not exactly sure what causes HS, we do know that people of all shapes and sizes can develop HS. Tobacco use has been associated with HS, but a direct link between smoking or chewing tobacco and HS has not been found yet.

Although people of all ages can develop HS, HS typically starts around puberty, suggesting that hormones may play a role in HS. Research also suggests that HS is caused by an over-active immune response. Researchers are working hard to improve our understanding of what causes HS.

MYTH: All people with HS progress to have severe disease.

FACT: Not all people with HS will go one to have severe disease. Some people will only ever have mild disease. But even ‘mild’ HS can be extremely painful and debilitating.

The pain associated with HS can make daily activities, work, and intimate relationships difficult. Everyone with HS, regardless of severity, deserves to be supported and given effective treatments.

MYTH: There are no good treatments for HS.

FACT: Although there is no single medication that works for every HS patient, there are several medical and surgical treatments available for HS. And researchers are working every day to develop new therapies. The most important step is to find a doctor who is knowledgeable about HS to help you better understand all the treatments options that might be right for you.

MYTH: No one can understand what I am going through and no one can help me.

FACT: People suffering with HS may feel embarrassed to talk about their condition and may keep it hidden from their family and friends, and even their doctors. They may not know what is happening to their bodies and they may not know that it is called HS. They may think that the painful nodules and abscesses they are getting are their own fault.

HS can make people feel isolated. But there are resources available that can provide reliable information about HS and direct you to doctors knowledgeable about HS, including the Hidradenitis Suppurativa Foundation's list of Hidradenitis Suppurativa Clinics.

There are also online and in-person support groups where HS sufferers can go for support, including Hope for HS.