Background/Purpose: I was diagnosed with Juvenile Idiopathic Arthritis at the age of 13 when I was experiencing joint swelling in my lower body and my hands. I was lucky that I was in medicated remission quickly. Being diagnosed with a health condition that has unknown causes or a cure, I wanted to know what kind of research was being conducted to help with finding causes or cures, as well as increasing daily quality of life and knowledge. I wanted to help other young adults who were going through the process of getting diagnosed and receiving treatment to know that they can stand up for themselves and become a stronger and more resilient person.

Intervention: CARRA is an organization of healthcare professionals and researchers working together to research, facilitate, and accelerate the understanding of the epidemiology, outcomes and biology of pediatric rheumatic diseases. Patients and caregivers collaborate with CARRA members to prioritize, design, conduct, and share results of their research. CARRA is organized in disease specific research committees and within those research committees are workgroups. Since February 2021, I have joined 6 CARRA workgroups as a patient partner working on projects I found interesting or pertinent to my life. My role is to bring the patient’s voice to the table and think about what the patient cares about through discussions and feedback on materials and study design. I was even asked to write an article about my experiences at meetings for the CARRA registry newsletter.

Maintenance: Being a patient partner has empowered me to advocate for myself and others, even as a young adult. At the beginning of my time with CARRA, I felt that because I do not have medical training or other advanced knowledge like clinicians and researchers, I could not be useful. I learned quickly that what I do have is my lived experience with JIA and my unique viewpoint that makes a difference in how research is conducted. As I realized my value, I began sticking up for myself in meetings when workload was a lot or meeting times were inconvenient with school. It was important to me that both parties – clinicians/researchers and patients – were heard and benefitting equally from a bilateral exchange, with me gaining knowledge about research in rheumatology, as well as networking opportunities for my career. This information and my advocacy skills translated into me being empowered to bring new ideas on how to improve my lifestyle and treatment to my own rheumatology provider as well as help other patients to advocate.

Quality of Life: I am still in medicated remission trying to get off medication, but arthritis still affects my daily life and leaves me to advocate for myself. One way is working on projects with the Arthritis Foundation, providing young adult patient input to legislation and programming. I am also a member of Young Patients’ Autoimmune Research and Empowerment Alliance (YP AREA), where we aim to empower adolescents and young adults (AYAs) to engage further with research to improve their care and daily lives. Finally, I am a user expert/Access Leader at my college working on providing feedback about spaces and experiences from a disability standpoint.

« Back to ACR Convergence 2022

ACR Meeting Abstracts - https://acrabstracts.org/abstract/learning-to-advocate-for-myself-and-the-young-adult-community-while-finding-my-place-as-a-patient-partner-at-carra-childhood-arthritis-and-rheumatology-research-alliance/