For people living with lupus—especially Black women, who face higher rates of the disease and more severe symptoms—-Black History Month serves as a reminder to actively amplify Black voices, share stories and raise awareness throughout the year. This month, we’re featuring Danielle Storr, a Black lupus warrior who embodies resilience, strength and leadership.
At just 13 years old, Danielle began noticing changes in her health—her fingers and toes turning white in the cold, persistent morning joint stiffness, and overwhelming fatigue after cheerleading practices. Within months, the symptoms intensified until even climbing stairs became a challenge: “The pain became so severe that I couldn’t climb the stairs to my bedroom without help, and getting out of bed in the mornings felt nearly impossible.” After a series of tests, referrals, and a week-long hospital stay, Danielle finally received a lupus diagnosis in February 2019, just shy of her 14th birthday.
Discovering the Lupus Foundation of America (LFA) gave Danielle and her family the knowledge and tools they needed to face lupus head-on. She shares, “Their resources were invaluable, they helped us understand what lupus really is and gave us the tools to cope with the challenges ahead.” She now uses the LFA resources as a National Lupus Ambassador to educate others in the community about lupus.
Be Fierce. Take Control.®: Empowerment Through Awareness
The Be Fierce. Take Control.® campaign represents empowerment and action, and during Black History Month, Be Fierce. Take Control.® campaign takes on even greater significance. Created to reach young women of color, it educates about early symptoms and encourages action before lupus causes lasting damage.
Danielle reflects, “If I had known about this campaign earlier and understood the warning signs, I might have been diagnosed much sooner instead of going through months of confusion and pain without answers.”
Highlighting the campaign during Black History Month is especially powerful. Lupus is 2 to 3 times more prevalent among African American, Hispanic/Latina, Native American, Alaska Native, Native Hawaiian and other Pacific Islander women than among White women. And nearly 90% of those living with lupus are women. Learn more at Lupus Facts and Statistics.
“This campaign helps bridge the gap in awareness and access by educating young women of color about the symptoms, encouraging earlier diagnosis, and ultimately improving outcomes. It saves lives and rewrites the narratives for communities that have been overlooked for far too long.”
Efforts like Lupus AIM (Addressing Health Inequities in Minorities) are also addressing the factors that place Black women at greater risk, working to create a better future for every person affected by lupus.
Honoring Legacy, Building the Future
Danielle’s advocacy is a continuation of the resilience and leadership that Black History Month celebrates. Whether participating in Walk to End Lupus Now®, contributing to research through RAY: Research Accelerated by You, or sharing her story as an LFA ambassador, she works to close gaps in awareness, representation and care.
Danielle explains how important your voice in public and private settings:
“Centering Black voices and leaders in lupus awareness, advocacy, and research is not just important, it’s essential. Lived experience carries a power that statistics alone can’t capture. When Black women see advocates and experts who look like them and share their journey, it builds trust and sends a clear message: your story matters, your pain is real, and you deserve to be heard.”
Her advice to anyone experiencing pain and lupus symptoms reflects the urgency to listen to your body:
“The advice I would give is simple but powerful: trust yourself. Don’t ignore or downplay what you’re feeling, even if it seems small or hard to explain. I know how easy it is to second-guess your symptoms or hope they’ll just pass, but your body is speaking to you for a reason. The sooner you seek care, the sooner you can begin to understand what’s going on and take steps toward healing.”
You know your body better than anyone. Her message is clear: trust your body, speak up and seek support.
Through her work with the Lupus Foundation of America and the Be Fierce. Take Control.® campaign, Danielle is helping to create a future where every young woman—especially young Black women—has the knowledge, resources and community to take control of her health and her story.
Take Action This Black History Month
This Black History Month, Danielle’s story reminds us that honoring the past means fighting for a more equitable future—one where early diagnosis, compassionate care and strong community support are a reality for every person affected by lupus.
Let’s seize this opportunity to learn more about the Be Fierce. Take Control.® campaign and how you can recognize lupus symptoms early at BeFierceTakeControl.org.
This post was originally published on this site