Hidradenitis suppurativa (HS), or acne inversa, can be an extremely difficult condition to live with. Many people who have it report feeling misunderstood and undertreated by their health care providers. HS is a skin condition that affects about 0.1 percent of the U.S. population. However, it disproportionately impacts Black and biracial Americans.
Genetic and environmental factors play a role in the development of HS, but studies show people of color may also have a different experience of diagnosis and treatment due to disparities in health care access. There’s a definite need for more research to understand how HS affects people of color, as a lack of research can leave those who are most likely to develop HS with less effective treatment options.
This article will explore how HS may appear in different skin tones, as well as some considerations for its diagnosis and treatment in people of color.
An analysis from 2017 showed the rate of HS in the U.S. is three times greater for African Americans and two times greater for biracial populations than for white people. Scientists are still working to uncover the reasons why HS is more common for these groups, but family history and environmental and social factors may play a role.
The prevalence, or amount of people affected by, HS is not well understood within the U.S. or globally. Research on HS in people of color is even more scarce. Moving forward, research studies need to include more people of color to better inform the diagnosis and treatment of HS in the people most affected by it.
HS causes the same symptoms regardless of skin color. Since there is currently a lack of research on HS in people of color, it may be more difficult for dermatologists to recognize its signs on darker skin tones. If dermatology providers are using reference materials that only show HS lesions on white skin, they might have a harder time diagnosing HS in a variety of skin colors.
Common symptoms of HS include:
These symptoms occur more often in areas where skin rubs together, like the armpits, groin, breasts, and buttocks. The appearance of these symptoms will vary across skin tones. Bumps, lesions, and scars may be brown or purple on skin of color, and pink or purple on lighter skin tones.
HS doesn’t just impact the skin. It can also have significant mental health effects. Although everyone’s experience is unique, research shows that people with HS have a higher risk for depression. Hispanic and African Americans, with or without HS, may also have a higher risk for depression.
One meta-analysis of more than 40,000 people with HS found that nearly 5 percent had anxiety and 17 percent had depression. For comparison, the National Institute of Mental Health estimates about 8 percent of all adults in the U.S. have had one or more major depressive episodes.
Although the racial identity of the participants was not identified in this meta-analysis of people with HS, general research on depression has shown that Hispanic and African American people are more likely to experience major depression than white people. African Americans are also more likely than other racial groups in the U.S. to rate their depression as severe.
Some comorbidities, or coexisting health problems, are more common for African American and Hispanic people with HS. Research has found these groups have a higher risk of metabolic syndrome, which is a set of health conditions that could indicate a risk for cardiovascular problems or diabetes. Metabolic syndrome is a combination of three or more of the following conditions:
Having metabolic syndrome is associated with lower rates of HS remission and more severe HS symptoms. When treating people with HS, it’s essential for health care providers to consider all aspects of an individual’s health and screen for coexisting issues that can make HS worse.
It’s unclear whether certain ethnic groups respond better to different treatments for HS because there is not enough research involving people of color who have HS. Without this information, dermatologists may be left guessing how to treat skin of color and trying different treatment options with limited success.
Several major U.S. trials on the biologic adalimumab (Humira), a systemic medication that can treat HS, included less than 20 percent of participants who were African American. Some HS clinical trials don’t have any participants of color, even though African Americans and people with biracial backgrounds are more likely to have HS.
Additionally, many dermatology research studies don’t specify Hispanic ethnicity when collecting data. Without more demographic details, researchers can’t observe potential differences in response to treatments.
Another important aspect of HS treatment is the management of scars. People with HS experience scarring when lesions heal or after excision surgery.
International studies have shown that people of African and Asian descent are more susceptible to “aggressive scarring” after an injury than people with white skin. African Americans have 15 to 20 times higher rates than people with lighter skin tones of forming thick, raised scars known as keloids, according to multiple studies.
One research study looking at people’s perceptions of their scars found that African Americans tended to have a more negative perception of their scars than white people. The African American people in this study showed greater concern about how scars would impact their career and sexual relationships. They also reported more swelling, sensitivity, itchiness, and pain from scars.
How you feel about your HS scars and whether your pain is adequately controlled can make a big difference in your quality of life. It’s important for health care providers to be sensitive to these factors.
Aside from treating underlying inflammation and physical signs of HS, adequate treatment may also require pain management. Many people with HS report significant pain, especially during flare-ups. However, there’s some evidence that racial bias impacts equal access to pain management options.
Studies suggest that health care providers may hold beliefs that change how they assess and treat different people of different skin colors for pain. Misconceptions can lead to the undertreatment of pain and worse health outcomes for people of color, especially Black Americans. As medical students and experienced health care providers become more aware of these disparities, there’s hope that more people will find the relief they need to live life to the fullest with HS.
If you have concerns about HS symptoms or insufficient HS treatment, be sure to tell your health care provider.
On myHSteam, the social network for individuals living with hidradenitis suppurativa and their family members, more than 34,000 members come together to ask questions, give advice, and share their stories with others who understand life with HS.
Do you feel your skin color has impacted your medical treatment for HS? What treatment options have you found most effective? Share your experience in the comments below, or start a conversation by posting on your Activities page.