Lupus Patient Perspectives: Self Advocacy

In this episode of Overdrive, the Rheumatology Network podcast, Dr. Kim Gorgens interviews two sisters who've turned a negative healthcare experience into a positive force for change in the lupus community through advocacy. They shared their story during the Patient Perspectives session at the annual meeting of the American College of Rheumatology which was held last month. In this interview, they share their story with Dr. Gorgens.

Juana Mata was diagnosed with rheumatoid arthritis in April 2009. In May 2009 she ended up in the hospital with a variety of symptoms and was sent home with a diagnosis of anxiety because she insisted that something was wrong. She refused to go home unless she had testing done, after the testing was completed. She was admitted to ICU with platelet count of 2,000 (normal is 150,000-450,000), she was diagnosed with thrombocytopenia and systemic lupus. If she would have gone home that day she would have died. She was scared and knew very little about lupus, she wanted to learn, and empower others about self advocacy.

In this interview from Overdrive, the Rheumatology Network podcast, Dr. Kim Gorgens, a psychologist and Rheumatology Network board member, interviews Ms. Mata and her sister, Estela Mata-Carcamo, about their work to support, empower and educating women and men living with lupus.

The sisters recently presented their work at the annual meeting of the American College of Rheumatology, which took place last month.

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ABOUT THE AUTHOR: Dr. Gorgens is Clinical Professor and Director of Continuing Education, Graduate School of Professional Psychology, University of Denver. For more articles from Dr. Gorgens, visit her blog "Brains Matter."

CITATION:
ABSTRACT NUMBER: PP11 • ACR Convergence 2020. Date: Sunday, November 8, 2020. "Knitting a Community of Hope”- Supporting, Empowering and Educating Those Living with Lupus, and Overlapping Conditions and Their Loved Ones via in Person and Virtual Support Groups That Include Art Therapy, and Wellness Techniques Is Key; Mental Health Is as Important as Physical Health." Juana Mata (1) and Ma. Estela Mata-Carcamo (2), (1)Looms for Lupus, La Puente, CA, (2) Looms for Lupus, Baldwin Park, CA