Anyone diagnosed with hidradenitis suppurativa (HS) will have plenty of questions—especially if, like most people, you've never heard of the disease. So let's get the basic definition out of the way: Once thought to be rare (more on that in a bit), HS is a chronic inflammatory illness that can cause painful lumps, open sores, and permanent scarring, often in the armpits, groin, buttocks, and under the breasts (really any place where the skin rubs together). Now, let's get to the other answers you need most:
Is HS My Fault?
No, it is not your fault. And for the record, HS does not develop because of “bad hygiene,” as doctors sometimes incorrectly (and even cruelly) imply. That sort of guilt-tripping “is deeply unfair, because none of us fully understands where HS comes from,” says Rashmi Unwala, M.D., a dermatologist at the Cleveland Clinic in Ohio.
What Do We Know About the Causes of HS Then?
“We're still trying to understand the fundamental mechanisms behind HS,” says Haley Naik, M.D., an assistant professor of dermatology at the University of California, San Francisco, where she established an HS clinic. We do know that people with HS experience occlusion (that’s doctorspeak for blockage) in their hair follicles, often in areas with a lot of sweat glands. When those follicles get blocked, skin cells and bacteria that usually live on the skin peacefully get trapped in places they don't belong. The result: The body’s immune system kicks into gear, triggering the inflammatory response that leads to pus-filled HS boils.
There are some known risk factors that can up the odds of HS:
It typically occurs in places where skin rubs against skin, like under the arms, the vulva, or in the folds of skin in people who are overweight.
Out-of-whack hormone levels might also fuel the condition, including having high levels of insulin and/or androgens, which begin to soar during puberty, spurring pubic and under-arm hair growth among other functions. In fact, many cases develop after puberty kicks into high gear.
Numerous studies have found higher rates of HS among smokers, and one recent paper published in Dermatology Reports found that 67% of participants were current smokers who’d smoked for an average of eight years before onset. As with basically anything having to do with smoking, the less you do it, the better off you’ll be. If you need help quitting, visit the American Lung Association for advice and support.
Is HS Rare?
No, HS is not rare—although, for decades, it was treated as such. Seeing the disease as rare “was probably due, in part, to misdiagnosis or under-diagnosis,” says Dr. Naik, “but also because of the shame and stigma a disease like HS can bring about. People didn't seek medical attention right away.” That the onset of HS often occurs around puberty, when young people can be intensely self-consciousness about their bodies, could help account for the under-diagnosis, as well.
Today’s estimates indicate that roughly 1% of Americans are affected. That might sound insignificant: But as Dr. Naik notes, for a condition of this severity—HS can be a disfiguring disease—that's a pretty huge number. To put it in perspective, roughly the same number of Americans are diagnosed with HS as are diagnosed with IBD (either Crohn's disease or ulcerative colitis), and fewer are diagnosed with more widely known illnesses, like multiple sclerosis (less than .5%).
Is HS an STD?
When you have itchiness or painful, cyst-like bumps or, in late stages of the disease, excruciating, draining open sores in sensitive areas like the groin and anus, “Is HS an STD?” is a perfectly reasonable question. But the answer is no. “In some cases, if these patients visit a physician unfamiliar with HS, that might be exactly what they're told—that they have a sexually transmitted disease,” like herpes or HPV, says Dr. Naik. Such misdiagnoses can, and do, delay helpful and proper treatment while compounding the embarrassment and shame HS so often sparks in people. Bottom line: HS is neither infectious nor contagious, and it’s not sexually transmitted.
What Are the Stages of HS?
“There are three clinical stages to HS,” says Dr. Unwala. In each stage, the symptoms are distinctive (though early diagnosis and treatment can help manage those symptoms, especially at the earlier stages):
In Stage I, you may notice small (perhaps the size of a pea), sometimes itchy, usually quite painful bumps in the armpits, groin, near the breasts, and (more commonly in men than in women) around the anus. These might resemble hard cysts or prominent razor bumps.
In Stage II, inflammation and infection have increased, and multiple abscesses may keep appearing on the skin. Pus-filled tunnels or tracts also form beneath the skin; eventually the abscesses can rupture, resulting in open sores.
In Stage III, advanced tunnels form, often connecting multiple lesions. At this point, the damage is permanent, says Dr. Unwala. “The tissue has been blown out, and multiple areas have scarring.” An entire armpit, for example, might be inflamed, she says, with large boils that are not only agonizingly painful, but also emit a bad smell from the draining pus and fluid.
Are There Treatments for HS?
The good news: Yes, there are, and the earlier you can start treatment, the better your outcome is likely to be, says Dr. Naik. For early and moderate cases of HS, doctors have a range of options to battle infection, keep new boils in check, and manage pain.
In the earliest stage, topical antibiotic creams (such as clindamycin or gentamicin) are often used to help manage symptoms.
For moderate and severe HS, when topical creams are deemed no longer sufficient, your doctor might prescribe oral or injected antibiotics; corticosteroid injections to ease pain and inflammation; or the biologic drug Humira (adalimumab), which targets and effectively blocks a specific protein believed to cause inflammation. (It's currently the only FDA-approved biologic for HS, though more are in the pipeline.)
Finally, the more severe stages of the disease can often require surgery, as well. This can range from out-patient procedures involving tissue removal—allowing the “tunnels” beneath the skin to drain (a method called “unroofing”)—to more complicated surgeries in which large sections of damaged skin are removed and replaced by reconstructive skin grafts.
The most successful treatment usually requires a multidisciplinary approach: medicine, surgery, and lifestyle changes (quitting smoking, losing weight, exercising more), according to study in the journal Clinical, Cosmetic and Investigational Dermatology.
Who Is Most Likely to Develop HS?
Hidradenitis suppurativa affects three times as many women as men, and though researchers still aren’t exactly sure why, it’s likely that hormones play a role. Other anecdotal observations and recent studies suggest that, in the United States, HS disproportionately affects African Americans, and African-American women, especially. Do they know why this is the case? Not yet. As with so much of HS, more studies are also needed to determine why certain racial or ethnic groups might be more prone to developing HS.
Can Diet Help HS? (Or Make It Worse?)
Honestly, either is possible. And big surprise, there’s not a whole lot of data to help us understand what changes may make a difference. In one survey of more than 200 patients, most people had limited at least one food group, and of those, about 86% had cut out multiple groups, according to the report in Dermatology. The top targets: gluten, dairy, refined sugar, tomatoes, and alcohol. About 30% said their symptoms improved—but a few said they worsened.
Sugars, milk, cheese, and other dairy products can raise insulin levels, which in turn can trigger an overproduction of androgens, a type of hormone that appears to be a factor in HS, according to the Mayo Clinic. So limiting those. Similarly, avoiding foods with gluten, particularly those that include yeast to rise (bread, pizza dough, etc.) may also help lesions heal.
The key to figuring out what your food triggers might be? Keep food diary and track your symptoms. Working with a registered dietician can also help.
Is There a Cure?
Not at the moment—but it’s the goal! As doctors and researchers look for answers, the best strategy for people with the disease is smart, careful management.
“We're hopeful that in the short term, we’ll be able to find more targeted therapies to help people live without pain, without the development of new lesions, and without the need to undergo huge surgeries,” says Dr. Naik. "In the next 10 years or so, I think hitting that goal is certainly possible. But the long-term goal, make no mistake, is a cure.”
HS Prevalence in Women vs. Men:Postgraduate Medical Journal. (2014). “Hidradenitis Suppurativa: A Common and Burdensome, Yet Under-Recognized, Inflammatory Skin Disease.” https://pmj.bmj.com/content/90/1062/216