Hidradenitis suppurativa (HS) is a non-contagious skin condition that can be treated. It causes small, painful bumps to form under the skin. These bumps often show up in places where skin rubs together, like your armpits or groin. Women are almost three times more likely than men to get HS, and it’s three times more common among Black people than white people. But there are big differences in how our HS is handled by the healthcare system. Black patients are less likely to get an early diagnosis, wait longer to see a dermatologist, have more serious symptoms when they are finally diagnosed, and are more likely to be treated in the emergency room, be hospitalized, and be sent to a surgeon for treatment.
A big reason for these differences is that Black patients haven’t been included in enough studies for HS. Plus, like many diseases that affect our community more heavily, funding for HS in general was very limited until 2018. That’s when the National Institutes of Health created grant funding specifically for HS research. Things have gotten better since then, but more progress is needed, especially since there is even less research on Black women. Better data will help us understand why HS is more common in our community, how to fix delays in treatment, and which treatments work best for Black women and the community as a whole.
The good news is that HS treatments have improved recently, and effective options are available. We put together this guide to help Black people living with HS — and their loved ones — understand the condition, learn about effective treatments (especially three new FDA-approved medications), and feel confident asking for the best medical care.
This guide focuses on biologic medications, one of the most advanced treatment options available for people with moderate to severe HS. Biologics work by targeting specific parts of the immune system involved in the inflammation that drives HS. However, biologics are only one part of HS treatment. Depending on the individual, healthcare providers may also recommend antibiotics, hormonal therapies, topical medications, corticosteroid injections, other medications, in-office procedures, or surgery.
Hidradenitis suppurativa starts in and around your skin’s hair follicles. Scientists don’t know exactly what sets it off, but research shows that your genes, hormones, and how your body creates inflammation are all part of it. Inflammation is your immune system’s response to infection or injury, meant to help you heal. But sometimes the immune system can cause too much inflammation or keep it going for too long.
Even though it’s not totally clear how hormones contribute to HS, research suggests they also play a role. Hidradenitis suppurativa usually starts after puberty, and for women (who make up most of the people with HS), flares can be linked to their menstrual cycle. HS is also more common in women with polycystic ovary syndrome (PCOS), a condition that affects hormones and periods. And HS can run in families. While obesity and smoking are associated with a higher risk of HS, they don’t explain why any one person develops the disease.
When HS is diagnosed later, the disease tends to be worse, and more skin areas need surgery. So, getting diagnosed and treated earlier might help reduce the permanent skin damage HS can cause and lower your chances of needing surgery. It will also mean you can start to feel better sooner. In rare cases, long-standing HS can also lead to a type of skin cancer called squamous cell carcinoma.
When HS symptoms start, they can look like bad acne. People can also mistake the condition for boils or cysts. As it gets worse, the bumps fill with pus and become very painful. Sometimes they burst, creating open sores that leak. In later stages, tunnels can form under the skin when abscesses connect. If you notice painful bumps, sores, or pimple-like spots in areas where your skin rubs together — like your armpits, under your breasts, around your waist or lower belly, or in your groin or buttock area — it’s a good idea to see a dermatologist.
It’s important to meet with a dermatologist whether you’re just starting to notice symptoms or have had HS for a while. They’re the experts trained to diagnose HS and recommend the right treatments. It can also be helpful to find a dermatologist who specializes in darker skin tones. If you’re looking for a Black provider, which can be tough since only about 3% of dermatologists in the US are Black, these websites can help:
You can also ask your primary care provider to recommend a dermatologist. When you make an appointment, ask about their experience treating skin of color.
U.S. doctors often talk about how severe HS is using “Hurley stages,” which are three levels named after the dermatologist who came up with them.
There’s a newer way to classify HS that comes from Europe. It looks at two different stages: the “inflammatory stage” is when your skin is actively forming bumps in your hair follicles. The “noninflammatory stage” is when the inflammation has settled, but there’s still some skin damage. With this new approach, the Hurley stages are used to describe the type of skin damage you have. This helps doctors figure out if surgery is needed and what kind of surgery would be best to fix it. Your doctor may describe your HS using either of these approaches.
Studies nationwide show that HS is more common in both Black people and women. One U.S. study found that HS was about three times more common in Black women than in white women. However, there isn’t enough research specifically on Black women. Scientists still don’t know exactly how many Black women in the U.S. have HS or why it’s more common in Black people and women.
Hormones seem to play a part, though scientists aren’t exactly sure how. In one study, 62% of women said their symptoms got worse around their period, usually the week before. HS is also more common in women with polycystic ovary syndrome (PCOS), a condition that affects hormones and periods. Pregnancy can also affect HS. In a study where most participants were Black women, HS got worse during 62% of pregnancies, and slightly more had a flare-up after giving birth. This doesn’t mean women with HS have unusual hormone levels or that hormones cause HS, but it does suggest that changes in hormones can impact the condition.
HS can be a very painful condition, and research has found that Black patients with HS are four times more likely than non-Black patients to have “severe” pain from it. This isn’t surprising, given that Black patients are also more likely to be diagnosed later, when their disease may be more advanced. On top of that, research also points out that — as with many chronic pain conditions — the pain of Black patients is undertreated. In one study, nearly a third of Black/African American patients strongly disagreed with the statement, “I am satisfied with how my pain related to HS is being managed by my doctors.” That’s twice as many as non-Black/African American patients.
Even though the first step to dealing with pain is to treat your HS, you might also need pain medicine until your disease is under better control. There are several kinds of medications that can help with HS pain. These include pain-relieving creams you put right on your skin, over-the-counter or stronger prescription anti-inflammatory drugs like naproxen, prescription medicines for nerve pain such as gabapentin and pregabalin, antidepressants that can also help with pain like duloxetine or amitriptyline, and, in really bad cases and only for short times, opioid pain relievers. If pain is a big part of your HS, make sure to talk to your doctor about the best way to manage it until your HS treatment starts working and your symptoms get better.
The main goals of treatment are to reduce flare-ups, relieve pain and itching, stop any infections, keep the disease from getting worse, and repair damaged skin.
Medications for HS include antibiotics to fight infection and inflammation, drugs that help control hormones that might contribute to HS, and immune-modulating medications, which help calm down an overactive immune response.
If you have moderate to severe skin damage, doctors may recommend surgery to drain abscesses and remove damaged skin. Studies show that Black people with HS wait longer than white patients to get a correct diagnosis. They also tend to have more serious symptoms when they are diagnosed. Black patients are also more likely to see a surgeon before a dermatologist, and more likely to have surgery.
Some of the newest medicines approved for HS are called “biologics.” Biologics for HS target specific parts of your immune system that are involved in inflammation. They’re given as shots under the skin. Patients usually inject themselves at home on a regular schedule (like every other week or weekly). The timing might change over time.
For more serious HS, a surgeon may remove larger areas of affected skin, and this might need to be done in a hospital.
It’s really important to know that HS is not your fault. Even if you have risk factors, like being overweight or smoking, that does not mean they are the reason you have HS. And poor hygiene definitely doesn’t cause it. If your doctor doesn’t take your HS seriously, makes you feel bad for risk factors that may or may not play a role, or doesn’t understand how complex the condition is, it’s time to find one who does.
Here are things you can do to help with treatment, have fewer flare-ups, feel more comfortable, and lower your risk of infection:
Learning about treatment choices can help you and your loved ones take a more active role in treating your HS and finding relief. The medications featured represent a new class of treatments that have been approved to treat HS, and each has its own benefits, risks, testing needs, and side effects. Your healthcare providers should share why a medicine is being recommended, what other options might work, and what support is available. To get the right treatment for you, seek clear information, timely care, and a plan that fits your needs. This is especially important for Black patients, for whom hidradenitis suppurativa is much more common compared with non-Black patients, but who often experience delays in diagnosis and much more severe symptoms when they are finally treated. The sooner you are able to get the right care for you, the sooner you can feel better.
This guide is not intended to provide a comprehensive list of all available treatments for HS. The medications featured represent a selection of established and emerging treatment approaches that may be considered at different stages of the HS journey. Treatment decisions are individualized and depend on a number of factors. Patients should talk with their healthcare team about the full range of treatment options that may be appropriate for them.
This information is generalized and not intended as specific medical advice. Consult your healthcare professional before taking any drug or commencing or discontinuing any course of treatment.
Hidradenitis suppurativa (HS) is a skin condition that causes long-lasting inflammation. It's treatable, and it shows up as painful bumps under your skin. You usually find them in places where skin rubs together, like your armpits, groin, under your breasts, around your waist, or on your butt. The main signs of HS — painful bumps, pus-filled pockets (abscesses), draining sores, and sometimes tunnels under the skin — are pretty much the same for everyone. Instead of appearing pink or red, as it typically does on lighter skin in medical photos, an inflamed area on melanated skin might look purple, gray, or brown. Since changes in skin color can be harder to notice on darker skin, don't just look for redness. Other important signs to pay attention to and tell your doctor about are pain, swelling, warmth, drainage, and bumps that keep coming back in the same places.
No. HS isn't caused by poor hygiene, and having it does not mean your skin is dirty. Scientists aren't exactly sure why some people get HS. They do know it seems to involve changes in and around your hair follicles (where hair grows), along with an unusual inflammatory response from your immune system. Genes and hormones may also play a part. Obesity and smoking are linked to a higher chance of getting HS, but they don't explain why any one person gets it. People who have never smoked and people at any body weight can develop it. This is particularly important for Black patients, because of the bias and stigma Black patients often experience when seeking medical care. Your HS symptoms deserve evaluation and treatment regardless of your weight or smoking history.
No. You can't catch HS from someone else or pass it on. HS is an inflammatory disease that involves an unusual response from your immune system. It isn't caused by germs or viruses and isn't contagious. While the inflammation can cause bumps to break open and leak, and bacteria can sometimes infect already-damaged skin, an infection isn't what starts HS in the first place.
Anyone can get HS, but it's much more common in women than men and usually starts after puberty. In the United States, HS is also much more common among Black people. One large U.S. study found that HS was more than three times as common among Black patients as white patients. HS can also run in families.
Black women seem to be especially affected by HS. Studies have found much higher rates of HS among Black women compared to white women, though we don't yet have a good national estimate of exactly how many Black women have the disease.
Researchers don't yet know why HS is so much more common among Black Americans. What they do know is that there are important racial differences in what happens after someone develops the disease.
Studies show that Black patients are often diagnosed later. They also tend to have more severe HS, go to the emergency room more often, get hospitalized more, or see a surgeon before they ever see a skin doctor.
Historically, Black patients have also been underrepresented in HS research and clinical trials, even though they are more likely to have the disease. Researchers are starting to pay more attention to this problem, but there's still a lot we need to learn so Black patients get the best care.
You're definitely not alone. HS is often mistaken for boils, infections, cysts, or ingrown hairs, and people can go years before getting the right diagnosis. The wait can be even longer for Black patients. In one U.S. study, Black patients waited an average of 4.8 years for an HS diagnosis, compared to 3.2 years for white patients — that's about 19 months longer. Black patients were also less likely to have seen a dermatologist, and when they did, they saw one later in their disease.
If you keep getting painful bumps, abscesses, or draining sores in places like your armpits, groin, under your breasts, or around your butt — especially if they keep coming back in the same spots — ask if HS could be the cause.
A dermatologist (skin doctor) is the specialist most likely to diagnose and treat HS. If possible, look for one who regularly treats people with the condition. This is especially important for Black patients: research has found that they are less likely than white patients to see a dermatologist for HS and tend to get to a skin doctor later in their disease. The sooner you are able to see a knowledgeable provider, the sooner you can get the right treatment. Of course, it's also never too late to get the medical care you deserve.
When you make an appointment, ask if the dermatologist treats HS. Before your visit, write down when your symptoms started, where you get bumps, and how often they return. Since HS can flare up and then get better before your appointment, take pictures when your symptoms are at their worst. Tell the doctor about any previous diagnoses and treatments, including repeated treatments for boils or infections, and ask directly, "Could this be hidradenitis suppurativa?"
If you feel like your symptoms aren't being taken seriously or you're not getting a treatment plan that helps, it's a good idea to ask another provider for a second opinion.
If you smoke, quitting is good for your overall health and might help your HS. If you are overweight or have obesity, losing weight might improve HS symptoms for some people. However, these lifestyle changes are not a replacement for medical treatment.
This is especially important for Black patients. Research has found that Black patients often have more severe HS even after researchers consider differences in body weight and smoking. If a doctor's only advice is "lose weight" or "stop smoking" while your painful bumps continue, you deserve a thorough HS evaluation and a treatment plan.
Gentle skin care can go hand-in-hand with your medical treatment. Avoid scrubbing affected areas, as this can irritate skin that is already inflamed. Your dermatologist might suggest an antimicrobial wash with an ingredient like benzoyl peroxide or zinc pyrithione. Warm compresses can help soothe painful bumps.
Try not to wax affected areas. If you shave, do so carefully. Try to avoid tight clothes that rub against affected skin, and ask your dermatologist about antiperspirants and wound-care products that won't irritate your skin. If a product burns, stings, dries out your skin, or seems to make your HS worse, ask about an alternative.
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