Hidradenitis Suppurativa

HS, also called acne inversa, is a chronic, long-term skin disease in which the hair follicles become inflamed. It causes swollen red lumps (either large or small, hard or filled with pus) under the skin (that are often very painful, sore or tender. HS can cause irreversible skin damage. However, effective treatment can help mitigate symptoms and improve quality of life.

There are three common manifestations of HS skin growth:

• Nodules – These are hard, inflamed bumps that remain beneath the skin surface
• Abscesses – These are inflamed bumps that may be filled with fluid or pus (a thick, whitish-yellow liquid that gathers at the site of an infection). Abscesses can open and leak, sometimes causing a strong odor.
• Tunnels – Tunnels are narrow structures that form beneath the skin between sores or abscesses. These tunnels can also drain fluid.

The severity of HS can vary from person to person. Some people may experience constant, recurring wounds, often in the same spot, while others may have periods in which no new wounds form. You could have HS lesions confined to a single site, or across multiple sites.

Researchers don’t entirely understand what causes HS. There is likely a genetic component, with a third of all people with HS have a family history of the disease.¹ Hormones and environmental triggers, including smoking or being overweight, are also thought to play a role.

The following factors can increase your risk of developing HS:

• Being female (2-3x more likely)^{5 6}
• Being Black or biracial
• Having family members with HS
• Being overweight
• Smoking

HS most often begins after the onset of puberty and into your 20s. However, it can begin at any age.

Recent estimates suggest that HS affects anywhere between less than 1% to 4% of the population, although this can vary from region to region. HS may be under-diagnosed globally. On average, it takes over 7 years to get an accurate diagnosis.⁶ 

HS is diagnosed based on your symptoms and medical history. It is often treated by a dermatologist. Because HS can be mistaken for acne, it may take time to receive an accurate diagnosis.

Timely diagnosis and treatment are crucial for mitigating permanent scarring and side effects. If left untreated, HS can lead to infection and sepsis, anemia (fewer red blood cells) and damage to your lymphatic system or even organs like the bladder or bowel. In rare cases, it can cause skin cancer. If you believe you may have HS, or if you feel your current treatment regimen is not effective, reach out to your doctor about your options.

In addition to any medical treatment, you can take steps to improve comfort. These include:

• Following a regular skin care routine that is gentle on your skin and doesn’t increase irritation
• Applying warm compresses to wounds or lumps
• Quitting smoking (if you smoke)
• Maintaining a healthy weight
• Limiting sweating and wearing loose clothing to avoid friction

HS is considered a progressive disease, meaning it often gets worse over time. However, this is not necessarily the case for everyone. Diagnosis and consistent treatment are critical. HS is more likely to become more severe if left untreated.

HS is considered an inflammatory disease, and having HS means you may be more likely to develop other inflammatory diseases. These include but are not limited to:

• Crohn’s disease
• Ulcerative colitis
• Atopic dermatitis
• Psoriasis
• Spondyloarthritis (SpA) – axial spondyloarthritis (axSpA) or ankylosing spondylitis
• Metabolic syndrome
• Cardiovascular disease
• Acne
• Polycystic ovarian syndrome (PCOS)

You can learn more at the HS Patient Guide.⁸

HS lumps can cause significant, chronic pain and discomfort. This can interfere with everything from sports and hobbies to going to work, going out socially and being with friends and family members. It can also be a psychologically challenging disease, and is associated with higher levels of depression and anxiety. You may experience feelings of embarrassment due to scarring and the smell associated with leaking abscesses. Dating, sex and romantic relationships may feel more daunting.

Your health care providers and your local community can both provide important forms of support. Share as much as you feel comfortable with friends and family members You can also talk with your doctors about what you’re experiencing and if you need more help managing the symptoms and effects of HS.

Researchers are continuously investigating potential new and more effective treatments. For guidance on the best treatment options for you—and to determine if you may qualify for a clinical trial—please speak with your healthcare provider.