Be Fierce, Take Control: One Young Woman’s Lupus Story

At just 13, Danielle Storr started noticing her fingers and toes turning white in the cold, stiff joints every morning, and a fatigue that no amount of rest could fix. Within months, even climbing the stairs to her bedroom felt impossible. After a string of tests, referrals, and a week-long hospital stay, Danielle was diagnosed with lupus in February 2019 — just before her 14th birthday.

What helped her family make sense of it all wasn’t just medical care — it was community. Connecting with lupus-specific resources gave Danielle and her parents the tools to understand the disease and cope with what came next. Today, Danielle has turned that experience into advocacy, working as a lupus awareness ambassador to help other young women recognize the early warning signs before the disease causes lasting damage.

Her story matters for a reason beyond her own journey: lupus is 2 to 3 times more common among Black, Hispanic/Latina, Native American, Native Hawaiian and other Pacific Islander women than white women, and nearly 90% of people living with lupus are women. Early recognition and a strong support network can change the entire trajectory of someone’s diagnosis.

That’s exactly what MS-RANDA is here for. If you or someone you love is noticing symptoms that don’t add up — joint pain, fatigue, unexplained changes — you don’t have to piece it together alone. Join our community to connect with trusted information, education, and people who understand.

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Story adapted from reporting by the Lupus Foundation of America, “Be Fierce. Take Control.®: Danielle Storr’s Journey of Advocacy and Empowerment”.