Thriving with Purpose: My Journey with Lupus and the Power of Advocacy
If you had told 12-year-old me, fresh off a life-changing lupus diagnosis, that I would one day stand on a stage in my hometown as a keynote speaker for a Lupus Awareness Banquet, I’m not sure I would’ve believed you. But here I am. And it’s only by the grace of God, the support of my community and a whole lot of faith that I now use the same diagnosis that once scared me to death as a driving force behind my purpose.
In May, Lupus Awareness Month took on an even deeper meaning for me. Earlier in the month, I had the incredible honor of returning home to Tifton, Georgia, to serve as the keynote speaker for the 1st Annual Lupus Awareness Banquet. It wasn’t just an opportunity to share my story — it was a moment to bring light to the very real rheumatologic care gaps in rural communities like the one that raised me. I spoke to an audience of family, friends and fellow warriors who, like me, have felt the confusion, isolation and frustration that come with a chronic autoimmune diagnosis. It was deeply personal and powerfully affirming to stand in that space, turning pain into purpose.
Just a few days later, I stepped into a completely different arena as a RheumChampion at the Rheumatology Research Foundation’s Investigators Meeting. Being invited to this national research conference in my role as a patient advocate was surreal. My job? To amplify the patient voice. I created social media content, engaged in conversations with researchers and grant recipients, and helped bridge the gap between academic science and lived experience. As someone who lives with lupus and aspires to become a pediatric rheumatologist, this was a full-circle moment. I wasn’t just sharing my story — I was actively helping to shape the future of rheumatic disease research.
And the month didn’t end there. On the last day of Lupus Awareness Month, I had the privilege of speaking at the Southside Lupus Awareness Summit in Riverdale, Georgia. Once again, I represented Morehouse School of Medicine, sharing my knowledge and personal journey with lupus. I talked about the early signs of lupus, the importance of medication adherence and strategies for self-advocacy in healthcare settings. But I also spoke about something even more important; faith. Because for me, surviving and thriving with lupus isn’t just a medical story. It’s a spiritual one. My journey has been guided by faith, anchored in purpose and lifted by the unwavering support of those around me.
One of the most special parts of that day was being surrounded by several of my classmates from Morehouse School of Medicine who came to support me in Riverdale. Their presence meant the world. In this journey, they have become so much more than classmates — they’ve truly become family.
Each of these events, whether in a banquet hall, a research conference or a community summit, reminded me why I chose medicine in the first place. As a future physician, I want to be more than a diagnostician — I want to be a healer, an advocate and a reminder to my patients that they are not alone.
This month was busy, but it was also deeply fulfilling. I’m grateful to every person and organization that gave me the platform to share my story, especially the Lupus Foundation of America Georgia Chapter, the Rheumatology Research Foundation and the organizers of the 1st Annual Lupus Awareness Banquet in my hometown. Their trust in me affirms that our voices matter — not just in patient rooms, but on stages, in policy discussions and in scientific research.
My journey with lupus isn’t over; it’s evolving. And I’ll keep showing up, speaking out and advocating until every patient has the care, compassion and community they deserve.
About the Author
Janya “Nya” Sims is a fourth-year medical student at Morehouse School of Medicine. She is passionate about healthcare access optimization, rheumatology and using her lived experience with lupus to inspire and advocate for others.
Contact
Janya Sims
MD-4 Candidate, 2025
jasims@msm.edu