The vision for #BlackWithHS came to me one morning while reflecting on my experiences as a Black woman with hidradenitis suppurativa (HS). I was diagnosed with the chronic skin condition when I was only 14 years old. My doctor told me I’d be living with it for the rest of my life. At the time, I yearned for some understanding of what I was going through.
What exactly is HS? Will it get worse? Can it heal? How does it affect people with black skin, like me? I needed answers.
I scoured the internet most nights. More often than not, the sites that talked about HS provided photos, case studies, stories, and conversations about HS through a European-dominant lens. What I couldn’t find was how HS affected people with dark skin — or, more specifically, Black people. On top of that, much of the information available was clouded with heavy medical industry vocabulary. I had to Google a different word every 5 seconds just to understand what I was reading.
I began to realize that people of color have little to no reference for the progression of the disease in their skin type. Lack of representation can lead to isolation. Moreover, it can deter people of color from seeking the help they need out of fear that they won’t get sufficient answers or proper care.
Historically, Black people have often been misdiagnosed and mistreated in the medical community. A 2020 study explains that it “comes from a time when doctors had essentially been socialized not to respect black people as human beings.”
I kept thinking of the Black women and men who are living with HS and don’t know it or think they’re alone. This platform is for them.
Through personal essays, expert Q&As, videos, and more, #BlackWithHS will cover a wide range of lifestyle and health topics pertinent to everyone living with this chronic skin condition. If we talk more about HS, I believe we can start to normalize it in everyday conversation.
Educating yourself about the condition can ultimately empower you to talk with your doctor and stand up for your health. Arming yourself with info about HS and its current treatments can help you feel more in control and confident on your healing journey.
The medical community is still gaining an understanding of the impact of this disease. According to a 2017 review, even though most research has been conducted on white populations, HS is more prevalent among African and Hispanic communities.
We don’t have to wait for a celebrity to further our cause — we can change our relationship with shame by using our voices and ushering in healing. Subsequently, we’ll help push medical research and discovery forward. Join me by sharing your story using the hashtag #BlackWithHS.