Here are 5 lupus patient leaders channeling their artistic talents into advocacy:
Living la vida lupus can be all-consuming — from doctor’s appointments and treatments, to unpredictable flares and complications related to this autoimmune disease.
Despite the challenges of navigating a lupus diagnosis, there are patients who are using their creativity and health experiences to advocate for others. They’re utilizing music, photography, writing, and more to raise awareness and cultivate community so others feel empowered, understood, and inspired.
Meet Dion, Patient Leader & Musician
Dion was diagnosed with Systemic Lupus Erythematosus (SLE) at age 32. The autoimmune condition had a heavy impact on his skin, heart, and joints. The diagnosis was terrifying for him. As a professional drummer, his body was his instrument. Shortness of breath, the inability to move as he needed to, and unpredictable chest pain changed how he interacted with the world. When his flares began to get out of control he was told he wouldn’t be able to continue his music. But he refused to give up his drumming and even put on several shows to fundraise for the lupus community.
Dion eventually founded the #BeatLupus organization as a way to educate others on a major misconception about lupus; just because patients “don’t look sick,” doesn’t mean they aren’t dealing with a severe illness. He hopes that by helping others to understand the challenges of lupus, the family members of lupus patients will feel empowered to seek more knowledge about the disease and in doing so, will expand the support systems of patients.
Meet Marisa, Patient Leader & Author
Marisa Zeppieri-Caruana is the founder and advocate behind Lupus Chick, an organization that offers practical advice, community support, and real life education for patients living with lupus. She’s a woman of many talents — all of which she uses to keep lupus awareness in the spotlight. You can find her dancing to trends on TikTok as she shares facts about the disease, blogging and writing investigative health pieces for different magazines and websites — and most recently, publishing a self-help book.
“Chronically Fabulous: Finding Wholeness and Hope Living with Chronic Illness” is a book for all patients and their loved ones who want to better understand how to cope with chronic disease. The book does a deep dive into Marisa’s journey, her depth, smarts, and spiritual advice as well as explains how faith, passion, and persistence can radically change our outlook. Get your copy here.
Meet Maci, Patient Leader & Makeup Artist
Over 85,000 followers agree — Maci has the content people want to see. This 28-year-old make-up artist and SLE patient is a TikTok creator who shares mini-vlogs about her day-to-day life. Her talent for making fast-paced, creative and fun videos has helped grow her platform and has offered a new way for her to share her lupus journey with others.
After being diagnosed in the summer of 2013, she feared she wouldn’t be able to continue her work as a makeup artist. With patience and perseverance, she fought fighting for the right treatment and has been able to manage her lupus well enough to continue doing what she loves: creating unique looks that bring new eyes to lupus education.
She says, “Because of my symptoms and the pandemic, I don’t do as many events as I used to. It’s mostly just creating looks for my TikTok channel and maybe a wedding or two if I’m up for it. I did have to limit my hours and the number of girls’ makeup that I could do at one time. But this kind of work brings me happiness, and I needed to stay busy so that I wouldn’t become stagnant at home. Lupus or no lupus when I sit at home, depression will make its way into my life. So I’m glad I get to share my tips and style on my channel!”
Meet Elijah, Patient Leader & Photographer
Elijah White was only 16 years old when he was diagnosed with lupus. But that didn’t stop him from following his passion as a photographer. He began photographing in 2012 during Hurricane Sandy where he found inspiration through the dark times and destruction. He used his talents to organize a photoshoot to help raise awareness for men living with lupus. Only 10% of those living with lupus are male, and Elijah wanted every man out there struggling with lupus to feel seen.
Meet Shamekka, Patient Leader & Motivational Speaker
Shamekka Marty — also known as Pretty Sick Lupus Chic — is a motivational speaker, career counselor, and author who started her patient advocacy journey after learning about her mother and grandmother’s lupus diagnoses. She witnessed everything they went through and understood their struggles. This experience helped prepare her own diagnosis of the same condition in 2012. She decided to take her caregiver turned patient experience and help others using her knowledge and story. Through her various social media channels, Shamekka provides daily motivation for others in the online health space.