Diagnosed with dermatomyositis in 2016, Karen Alexander, a top high fashion model for two decades, has become a powerful advocate for those living with this rare, debilitating condition. Using her platform, she tirelessly raises awareness about the urgent need for better diagnosis, treatment, and care for women of color who are disproportionately affected by myositis.

With a career spanning over four decades, Karen broke barriers for Black women in the fashion industry, gracing the covers of prestigious magazines like Vogue and Elle, and working with iconic brands such as Calvin Klein, Ralph Lauren, and Chanel. Now, she channels that same passion into advocating for her “myositis sisters,” emphasizing the importance of increasing diversity in clinical trials, educating healthcare providers about health disparities, and reducing diagnosis times.

Myositis refers to a group of rare, chronic, and incurable neuromuscular diseases that cause muscles to become weak, painful, and tired. The disease can affect not only muscles but also the skin, lungs, and heart, leading to severe and potentially life-threatening complications. Women of color, particularly African American women, are more likely to develop severe forms of myositis and face higher mortality rates than their white counterparts. They also experience challenges in diagnosis due to symptoms like unusual rashes and muscle weakness, which may not be easily recognized on darker skin tones.