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World Lupus Day: Kaamilah Gilyard, Reclaiming Her Shine

Kaamilah Gilyard smiling headshot in black and white

Kaamilah Gilyard

Kaamilah Gilyard always dreamed of becoming an actress. Just when she was getting ready to show the world her talents, she was diagnosed with Lupus, a chronic autoimmune disease that causes the immune system to attack the body. Her journey with Lupus has not been easy and has affected every aspect of her life, including her acting, education, job security, family, and relationships. Kaamilah used the diagnosis as motivation to prioritize her health. Kaamilah says she is a spiritual person, and believes that “God gives His hardest fights to His strongest warriors.” She is one of them, fighting not just for herself but for others with Lupus as well.

Kaamilah’s advocacy work started while she was hospitalized for more than a month. After she recuperated with at-home care, she contacted the Lupus Foundation of Pennsylvania, and they connected her with a local foundation. She spoke to State representatives and let them know that more research funding was needed for Lupus. She made it her personal goal to meet them at the State Capital, saying “I found my voice and have not shut up since.”

Kaamilah has visited Washington, D.C. on several occasions to speak with Senators and Representatives to push bills through. She was the inaugural speaker at the Congressional Lupus Caucus in 2012. She also spoke in Albany, New York, to declare May National Lupus Awareness Month. She has worked with the FDA, the Lupus Research Alliance, and the Multicultural Lupus Taskforce to get people of color and underrepresented communities involved in clinical trials.

Thanks to advocates like Kaamilah, new drugs for Lupus are on the market today. The treatments are helping her prepare to audition again for acting roles. She is transparent about her diagnosis and what she needs to perform at her best. She is grateful for advocates and celebrities like Selena Gomez and Ava DuVernay, who have spoken publicly about their Lupus challenges.

On World Lupus Day, Kaamilah’s message is to give grace and remember that although Lupus is a hidden disease, Lupus Warriors are here and will be seen and heard. People can celebrate by wearing purple, sharing messages of support for the Lupus Foundation of America and the Lupus Research Alliance, and tagging them in their posts.

To actors dealing with chronic illness and disabilities, Kaamilah’s advice is to drown out all negativity and keep all the positivity that they need. She wants them to remember that the biggest voice they need to hear is their own.

Kaamilah Gilyard has turned her challenges into advocacy work to help others like her. Her story is a reminder that with purpose, support, and determination, anyone can reclaim their star, regardless of their disability.

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Juliet Romeo
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