What does feeling truly seen and supported mean in your health care? For many LGBTQIA+ people with kidney disease, the answer isn’t simple. Jess Walters is a mixed-media artist, Board Certified Patient Advocate, and independent scholar living with a kidney transplant. Marissa is the Patient Programs Director at the National Kidney Foundation (NKF) and a social worker working to make kidney care more inclusive. Together, they share what supportive care and community look like and why they matter.
In today's episode we heard from:
Jess Walters (they/them) is a mixed-media artist, Board Certified Patient Advocate (BCPA), and independent scholar from Charlottesville, Virginia. They are a multiply-neurodivergent, queer, nonbinary person with Alport syndrome, a rare genetic disorder which caused late-onset deafness and kidney failure at age 29. In 2018, after undergoing two months of peritoneal dialysis, Walters received a kidney transplant from a living donor at the University of Virginia, where they currently serve as an inaugural FusionLab Arts Research Fellow at the Center for Health Humanities and Ethics in the School of Medicine. Their research focuses on the intersections of art and health, navigating accommodations in cultural arts spaces to promote individual and community wellbeing by including disabled, neurodivergent, and chronically ill participation and perspectives. They regularly participate in Kidney Patient Summits with the National Kidney Foundation and have served as a member of their Diversity & Health Equity Advisory Committee for 4 years.
Marissa Argentina, LMSW is a licensed social worker who has been in the field of nephrology since 2010. She has worked for the National Kidney Foundation since 2015 and has been working on the NKF Peers program 2017. She is currently the Patient Programs Director at the National Kidney Foundation. She had previously worked as a dialysis center social worker in the Bronx, NY.
Additional Resources:
The Impact of Unequal Care for LGBTQ+ Kidney Patients
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