This Black History Month, we’re centering the voices, stories, and experiences of Black lupus warriors. Because when you see advocates who look like you and share your journey, it sends a powerful message: your story matters, your pain is real, and you deserve to be heard. Throughout February, we’re sharing resources and community spaces designed to support and empower Black individuals navigating life with lupus.
Lupus, Hair Loss, and Black Hair Care
For many in the Black community, hair is deeply tied to identity, culture and self-expression. Lupus-related hair loss – whether from discoid lupus, medication side effects, or disease activity – can be emotionally devastating. Protecting your hair while managing lupus requires understanding how the disease affects your scalp and hair, and making intentional choices about styling products and treatments.
We’ve created a comprehensive resource with practical tips specifically for Black women navigating hair loss and hair care while living with lupus. From choosing gentle styling options to knowing when to see a dermatologist, this guide offers the information you need to protect your hair and your scalp health. Read more about lupus and hair loss and download our infographic for quick reference.
A Space for Black Women Living with Lupus
Community and connection are essential to navigating lupus – especially when you share your story with people who truly understand your lived experience. That’s why we created Sister circle, a national virtual support group providing a nurturing, empowering, and affirming space for Black women living with lupus.
In the Sister Circle, participants come together to share stories, uplift one another, and honor the strength and wisdom rooted in their experiences. Through this cycle of sisterhood, they foster healing, connection, and the power of navigating the lupus journey together. Register now and find support near you.
Empowerment Through Early Action
The Be Fierce. Take Control.® campaign was created specifically to reach young women of color with life-saving information about lupus. Since lupus is 3 times more prevalent among African American women than among White Women – and nearly 90% of those living with lupus are women – early awareness can change the trajectory of someone’s life.
This month, we featured Danielle’s inspiring journey as a lupus warrior and National Lupus Ambassador who embodies the spirit of Be Fierce. Take Control.® Her story reminds us why recognizing symptoms early and trusting your body matters – especially for young Black women who may not know that lupus could be the cause of their unexplained pain and fatigue. Learn more about recognizing early symptoms and taking actions at BeFierceTakeControl.org
Voices from the Black Lupus Community
This Black History Month, we shared Jeneva’s experience living with discoid lupus and how it has impacted her skin and daily life. Discoid lupus is the most common form of chronic cutaneous lupus, often causing disc-shaped rashes on the scalp and face that can lead to scarring and permanent hair loss if left untreated. For Black women, understanding how lupus presents on darker skin is crucial to catching symptoms early and seeking the right care.
We also honored Jeff’s journey. After 14 months of searching for answers, Jeff was diagnosed with lupus and later received a life-saving kidney transplant. His message to the lupus community is one of hope and perseverance: “Following your doctors’ treatment plan closely and remaining positive throughout life is essential to surviving this disease. Just remember that people love and depend on you.”
The Importance of Self-Advocacy
Self-advocacy means telling people about your thoughts and feelings, asking for what you need, knowing your rights, and making choices that affect your life. When you advocate for yourself, you enable your doctors to treat you effectively, empower those around you to support you, and ensure your needs are being addressed. No one knows your body better than you do—that’s why the best person to advocate for you is you.
You can also advocate for the entire lupus community by joining RAY® (Research Accelerated by You), the Lupus Foundation of America’s secure online registry. When you share your unique experience with lupus, you help deepen understanding of the disease and accelerate the development of new treatments. Representation in research matters. To develop treatments that work for everyone—especially communities most affected by lupus—researchers need to hear from diverse voices, including yours.
At the Lupus Foundation of America, we recognize that Black History Month is not only a time to reflect, but a time to recommit. We honor the strength, leadership, and advocacy of Black individuals living with lupus while continuing our work toward equitable diagnosis, compassionate care, and meaningful support for every person affected by the disease. Your voice matters. Your story matters. Together, we move this mission forward.
