Nyobie Gordon-Ricks’ Lupus Journey: Finding Power and Advocacy in the Face of Lupus

Nyobie’s journey with lupus is a story of resilience, empowerment, and the transformative strength of finding her voice. Diagnosed in 2010 after a difficult 19-year journey through eight different doctors, Nyobie has lived through the complexities of a chronic illness that disproportionately affects Black women (lupus prevalence is three times higher in Black/African American populations compared to White people1). Her story is not only one of personal perseverance but also a call to action for greater awareness of lupus and advocacy within the Black community. Nyobie’s path to diagnosis was fraught with challenges and dismissals
“Doctors and medical staff had spent years dismissing my concerns and questions about my health.”
For nearly two decades, she endured symptoms such as painful and irregular periods, joint swelling, muscle pain, partial paralysis, extreme fatigue, and rashes that covered her face and body. Despite these debilitating signs, it wasn’t until 2010 that she finally received clarity. Reflecting on her early experiences in medical settings, Nyobie admits she didn’t always feel comfortable speaking up.
"Being ignored made me feel like, as a patient, I wasn’t a priority to them."
This pervasive feeling of invisibility left her hesitant to voice her concerns or press for answers, even as her symptoms worsened. It wasn’t until she embraced her power that Nyobie’s perspective began to shift. “Understanding that my voice is powerful and that I had to take charge and speak up in order to get the attention that I not only needed but deserved changed everything.” This realization became a cornerstone of her journey, empowering her to demand the treatments and therapies necessary to manage her condition effectively. The impact of lupus on Nyobie’s life has been profound. The severity of her condition has left her disabled, forcing her family to adapt to a new reality. Yet, despite the challenges, Nyobie has found strength in her circumstances. “It hasn’t always been easy, but we have found a way to manage and are doing great”. Nyobie’s story underscores a crucial gap in healthcare: the lack of awareness about lupus in the Black community.
“Black women are two to three times more likely to have lupus than any other race...Our community needs to be educated on what lupus is, how to recognize the signs and symptoms of lupus, and that this disease can be serious and fatal.”
Yet, barriers often hinder early diagnosis and effective treatment. Nyobie is passionate about changing that narrative, advocating for education, early recognition of symptoms, and empowering individuals to advocate for themselves. She has become involved as a Lupus Foundation of America advocate, making her voice heard on much needed policies to improve access to care, and she is an Ambassador, sharing her story in her community and raising awareness at local events. For Nyobie, this knowledge isn’t just empowering—it’s lifesaving. “Getting a quick and accurate diagnosis can make a huge difference in managing this disease.” She exemplifies the power of self-advocacy and the importance of using one’s voice to fight for better outcomes. Her journey reminds us all that being heard is not just a privilege but a necessity, particularly in healthcare. As she continues to share her story and advocate for greater awareness, Nyobie is a beacon of hope and strength for those navigating similar paths. Her words echo a powerful truth…
“Your voice is powerful. Advocating for yourself can give you the confidence you need to ensure you get the best care possible.”
1. Izmirly PM, Parton H, Wang L, et al. Prevalence of Systemic Lupus Erythematosus in the United States: Estimates From a Meta-Analysis of the Centers for Disease Control and Prevention National Lupus Registries. Arthritis and Rheumatology 2021;73(6):991-96. doi: 10.1002/ART.41632

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