For people who develop HS, also known as acne inversa, the appearance of boil-like lesions can be confusing. When Francisco Kerdel, MD, founder of Florida Academic Dermatology Center in Coral Gables, sees new patients with HS, “the most common history that we get is that they get recurrent boils and they have to go to the emergency room for them to be drained,” he says. Here’s what everyone with hidradenitis suppurativa should know about managing and treating the chronic skin disease:
1. Hidradenitis suppurativa typically develops in areas where skin rubs together.
The disease commonly flares up in the armpits, groin, buttocks, and in women, underneath the breasts, says Dr. Kerdel. Hair follicles in those areas become blocked, triggering an inflammatory process that can affect apocrine glands, special sweat glands that happen to be prevalent in areas of the body most affected by HS. “There may also be a secondary effect from bacterial overgrowth and the damage that occurs in the site then damages the apocrine glands,” says Kerdel.
2. Hidradenitis suppurativa can be misdiagnosed or mistaken for other conditions.
“HS can be mistaken for ingrown hairs, bacterial Infections, and folliculitis,” says John Frew, MD, PhD, a clinical scholar in the Laboratory of Investigative Dermatology at The Rockefeller University in New York. In the buttocks, HS can present like pilonidal sinus disease, an inflammatory condition that causes an abnormal skin growth in the crease of the buttock, according to the NLM. In the genitals, HS can be misdiagnosed as sexually transmitted infections, Dr. Frew says. Because HS can look like a number of other conditions, the American Academy of Dermatology (AAD) recommends seeing a board-certified dermatologist to receive an accurate diagnosis. To diagnose HS, your dermatologist will review your symptoms and medical history. There’s no specific test for HS, but a sample of the pus or fluid from the lumps may be sent to a laboratory to help rule out other conditions.
3. The exact cause of hidradenitis suppurativa is unknown, but genetics and environmental factors probably play a role.
HS occurs when hair follicles become blocked with bacteria. These follicles can burst, releasing bacteria into the skin, which may trigger the immune system. It’s not known exactly what causes HS, but there might be genetic factors at play — 30 to 40 percent of people with HS have a relative with the disease, according to the NLM. There may be more to it, however — the disease is probably linked to a combination of genetic, environmental, and hormonal factors. “A lot of the time we cannot pinpoint a specific cause in one individual,” says Frew. “There are multiple associations with HS including cigarette smoking, obesity, family history, inflammatory bowel disease, and hormonal changes (pregnancy, polycystic ovarian syndrome), but there is no single cause that is common to all people with [the condition].” It is known that HS isn’t contagious and is not caused by poor hygiene.
4. The severity of hidradenitis suppurativa can vary.
There are three stages of HS, called Hurley stages, according to the National Organization for Rare Disorders.
Stage I: In mild HS, there’s one or a few lumps in one area of the skin. You might feel itching or discomfort in affected areas, but there’s little or no scarring or tunneling.Stage II: In moderate HS, lumps get bigger and may appear in more than one area of the body. Abscesses form and recur, sometimes forming tracts or scars.Stage III: In severe HS, you may experience widespread lumps and scarring. The affected areas can contain multiple tracts and abscesses.
Receiving an accurate diagnosis and starting treatment early can help delay progression to the next stage.
5. While there’s no cure for hidradenitis suppurativa, treatments are available.
The biologic drug adalimumab is the only FDA-approved drug for HS. It works by blocking specific immune system proteins to help reduce the inflammation underlying HS. Other treatment options include antibiotics, ablative laser treatments, and surgery, says Kerdel. Topical treatments such as antimicrobial skin washes are also helpful for some patients. There are also clinical trials underway to investigate new treatments, so there could be more good news for patients in the future. Until then, the best approach is to work closely with your dermatologist. “No single treatment is successful for everyone with HS — and the best treatment is often a combination of medical and surgical therapy combined with lifestyle modifications,” says Frew. “Individuals should speak with their dermatologist about what treatment works best for them.”
6. Lifestyle changes can help manage the symptoms of hidradenitis suppurativa.
You might start by scheduling a hair removal appointment. “Recognizing that the hair follicle is the primary target of the disease, sometimes we recommend people have a laser hair removal in the areas that are prone to being affected,” says Kerdel. “By removing the hair follicles, you might prevent HS from arising in those areas.” Also important: Addressing underlying health problems, especially obesity or a smoking habit if you have one. “Smoking and obesity are very closely linked to the disease, so we do recommend weight loss, and we recommend people stop smoking if they’re smoking,” says Kerdel. Avoiding shaving affected areas, wearing loose-fitting clothing, taking steps to reduce sweating, and following a daily skin-care routine can also help reduce your risk of skin irritation and HS flares.
7. People with hidradenitis suppurativa often have other conditions, too.
“We notice that a lot of people with hidradenitis suppurativa have comorbidities,” says Kerdel. The results of a study published in October 2018 in the journal Dermatology and Therapy show that people with HS were more likely than those without HS to have a variety of skin conditions, such as sebaceous cysts and acne, as well as other medical conditions, such as diabetes and hypertension. Compared to people with mild HS, people with more severe disease had more comorbidities, suggesting the need for a treatment effort involving a coordinated group of specialists.
