BlackDoctor.Org: What led to your creation of “Lupus Sistas”?
GD: Even though I had the support of my family and friends, I was still looking for support from Black women who were living with this disease everyday because I believe support helps you to have a better life. After not finding what I was looking for, I created my own online support group, Lupus Sistas. The vision for Lupus Sistas has grown to provide support and connection and to educate Black women about this disease and it also includes the medical community. With over 90 percent of lupus patients being women and African American women being diagnosed with lupus at rates two to three times higher, minority lupus patients need to have a seat at the table when it comes to new developments in medication to treat lupus.
Lupus Sistas provides an outlet and a platform to discuss the everyday issues and concerns that can come up for women living with lupus, like the endless doctor’s appointments, issues with our bodies, getting everything done and still balancing life. It’s helped me to see that by sharing my story, I give permission for others to share theirs. When we swap stories, and share encouragement with each other, it gives us all hope and we work to live our best lives with this disease.
BlackDoctor.Org: What legacy would you like to leave behind?
GD: I’d like to be known as a woman who was given a hand of cards that included living with lupus and played them well. And I want to be known as one of the advocates who helped bridge the gap in the awareness, education and medical treatment of lupus. WEGO Health is an amazing platform that helped me fulfill my vision as a patient health expert and advocate. The platform enables people like me to share my journey and my perspective with the healthcare industry through different studies, surveys and consulting.
For those looking for online lupus support groups, check out Lupus Sistas!