Hidradenitis Suppurativa: 10 Things Every Black Person Should Know

Hidradenitis Suppurativa (HS) is a chronic inflammatory skin condition that affects a significant portion of the population, yet remains under-recognized. It is estimated that approximately 3.3 million people in the United States are living with HS. Sometimes referred to as acne inversa, HS usually presents itself during puberty with extremely painful, pus-filled lumps deep within the skin that often look like pimples or cysts.

Due to the stigma often associated with the location of symptoms and a lack of awareness, it often takes years for patients to receive a correct diagnosis.

Here are 10 things you need to know about HS:

1. HS Isn’t Just a Boil

What is HS?

HS is a chronic skin condition characterized by painful, boil-like abscesses, nodules, and tunnels under the skin that can drain pus. These lesions typically appear in areas where skin rubs together, such as the armpits, groin, buttocks, and under the breasts.

2. The Pain Can be Debilitating

Hidradenitis suppurativa can affect one or several areas of the body. According to the Mayo Clinic, signs and symptoms of the condition include:

Blackheads. Blackheads appear in small, pitted areas of skin, often appearing in pairs.
Painful pea-sized lumps. The condition usually starts with a single, painful lump under the skin that persists for weeks or months. More bumps may form later, usually in areas where you have more sweat and oil glands or where the skin rubs together, such as the armpits, groin, buttocks and breasts.
Leaking bumps or sores. Some bumps or sores get bigger, break open and drain pus with an odor.
Tunnels. Over time, tunnels might form under the skin, connecting the lumps. These wounds heal slowly, if at all, and drain blood and pus.

Dr. Jenny Hsiao, Associate Clinical Professor of Dermatology at the University of Southern California and member of the HS Foundation, emphasizes the severity of HS symptoms: “The number one symptom of HS is pain, which can be incredibly debilitating. There are other symptoms as well, such as itching and drainage, sometimes accompanied by an unpleasant odor, which can be really bothersome,” she notes.

3. HS Can Impact Your Quality of Life

HS severely affects the quality of life of those who suffer from it, often more so than other chronic inflammatory skin conditions like psoriasis or eczema.

Dr. Hsiao highlights this impact: “HS has a greater impact on quality of life than we see for other chronic inflammatory skin conditions.” She notes, “Patients often feel isolated and embarrassed, which can significantly affect their mental health.”

Patients with HS often feel isolated, experiencing embarrassment, social isolation, and low self-esteem.

4. Your Diagnosis May Be Delayed

One of the major challenges with HS is its under-recognition and misdiagnosis. Many patients endure symptoms for years before receiving a correct diagnosis, with an average delay of around 10 years. This delay often results from a lack of awareness about the condition among both the general public and healthcare providers.

“With the correct diagnosis, appropriate management can begin, but if you’ve never heard of HS, it can be hard to understand that this is what you have and that you should see a dermatologist,” Dr. Hsiao adds.

Many people with HS will experience three misdiagnoses along the way. The delay in diagnosis can result in the disease progressing to more severe HS, particularly for patients with aggressive progression.

5. There is No Cure, But Treatment Can Help You Manage

There are both medical and procedural treatment options for HS. These include:

Topical Treatments: Medications applied directly to the skin.
Oral Antibiotics: Used primarily for their anti-inflammatory properties.
Hormonal and Metabolic Therapies: Sometimes used to manage symptoms.
Biologic Medications: FDA-approved drugs like adalimumab and secukinumab target specific inflammatory pathways to reduce symptoms and disease progression.

“The good news is we do have treatments for HS,” Dr. Hsiao explains. “When patients are able to come in early, our hope is that we can get them on medications that can help slow disease progression, so that their disease is overall better controlled and they don’t reach that level of severity. However, I’ve seen cases where it’s been years and years of untreated HS, so I think the key part is early diagnosis.”

6. Early Detection is Key

Early diagnosis and treatment are crucial in managing HS effectively. Early intervention can help control the disease and prevent severe complications.

“I think patient education is really key. In recent years, I’ve had many more patients come to see me for what they believe is HS, possibly because they’ve heard about it on social media. I believe that with more public education about HS, we can definitely help with early diagnosis,” Dr. Hsiao notes. “When a patient comes to their doctor and says, ‘I’ve read about this condition called HS and I think I have it,’ we can diagnose it based on symptoms, medical history, and physical exam. We don’t need a skin biopsy or blood draw to diagnose HS.”

If your history includes boil-like abscesses or painful skin nodules, particularly in areas such as the armpit, groin, or buttocks, and you’ve had these episodes twice in a six-month period, it’s time to see your healthcare provider.

“With that history, there’s a very high potential that the patient has HS. If patients are aware that this could mean they have HS, they can seek out the appropriate healthcare provider to help manage their condition,” Dr. Hsiao adds.

7. Women and Black Patients Are More Likely to Develop HS

While the disease can affect anyone, women are more than twice as likely to have the condition, and Black people are three times as likely to have the condition.

8. Holistic Management Can Prevent Flares

In addition to medical treatments, lifestyle modifications can help manage HS symptoms:

Stress Management: Stress can trigger HS flares, so managing stress through therapy, mindfulness, and relaxation techniques is beneficial.

“I believe that there is a mind-body connection, and stress can certainly trigger HS flares. It’s essential to prioritize emotional and mental well-being, whether that involves seeking support from a therapist or making healthy lifestyle choices,” Dr. Hsiao shares.

Healthy Diet: A balanced diet, possibly following a Mediterranean diet, may help reduce inflammation.

“A balanced diet like the Mediterranean diet, which emphasizes whole foods like fruits, vegetables, and whole grains, can be beneficial. However, it’s essential to remember that moderation and balance are key,” Dr. Hsiao adds.

Exercise: Low-impact activities like swimming can help maintain fitness without aggravating symptoms.

“Exercise can be challenging with HS, as patients often experience pain when engaging in physical activities. Finding ways to exercise that are compatible with the condition, such as swimming, can be helpful,” Dr. Hsiao notes.

Supplements: Some evidence suggests that zinc supplementation may help.

“Some supplements like zinc may be beneficial in reducing inflammation, but it’s essential to remember that excessive zinc intake can lead to copper deficiency,” Dr. Hsiao advises.

It’s also important to address overall health factors, such as smoking cessation, as HS patients are more likely to develop other conditions like high blood pressure, diabetes, or metabolic syndrome.

“The goal is to provide holistic management of patients’ well-being and help them get back to doing things they love,” Dr. Hsiao emphasizes. “I recall a patient who was a young Black mother in her 20s who struggled with carrying her baby due to her HS symptoms. After we started treating her condition and reducing her inflammation, she was able to return to her normal activities, including carrying her toddler. This experience reinforced the importance of providing holistic care for patients with HS.”

9. HS Isn’t Caused By Poor Hygiene

“HS is not caused by personal fault or hygiene. It’s not because someone shaved their skin incorrectly or didn’t wash properly. It’s not related to hygiene. HS is an autoimmune condition where there’s too much inflammation in the skin. It’s not an infection, it’s not contagious, and it’s not caused by someone’s behavior or lifestyle. My hope is that by educating people about HS, we can remove the self-blame and stigma that comes with it. If anyone hears otherwise, it’s simply not accurate,” Dr. Hsiao notes.

10. Research Into HS is Ongoing

Research into HS is ongoing, with new treatments continually being developed. Clinical trials are underway to find more effective and safer medications.

“There are many clinical trials currently ongoing for HS,” Dr. Hsiao shares. “My hope is we get more and more medications that are FDA approved, allowing us to choose what would be best for each patient.” She concludes, “The pipeline for HS medications is long and promising, giving us hope for better management of this condition in the future.”

Support groups and resources like HS Connect, Hope for HS, and the International Association for HS Network provide invaluable community support. These organizations help patients feel less isolated, share experiences, and access resources and information.

“These communities are powerful and valuable because they allow people to connect with each other, share tips, and feel less isolated,” Dr. Hsiao adds.

Awareness and education about Hidradenitis Suppurativa are crucial in reducing the delay in diagnosis and improving the quality of life for those affected. By understanding HS, recognizing its symptoms, and knowing the available treatment options, you can better advocate for yourself and receive the care you need.

If you or someone you know is suffering from symptoms that might be HS, seeking early medical advice is essential. For more information and support, visit the HS Foundation website or join a local support group.