RDAM 2024: Self-Management for Patients Living with Rheumatic Conditions

My journey with systemic lupus erythematosus (SLE) and rheumatoid arthritis began when I was just 12 years old, back in 2012. From enduring malar rashes to excruciating joint pain that rendered me immobile, my battle with lupus has been tough. There were nights when my grandmother and mother had to carry me to the bathroom due to the severity of the pain. In college, my roommates became my support system, helping me with basic tasks like showering and navigating the night due to relentless pain.

When I began college, I vividly remember one instance when my roommate had to rescue me from a bus stop, carrying me back to my apartment because my joints had succumbed to unbearable pain after class. Throughout my college years, my best friend stood by me, accompanying me to the hospital during episodes of burning pain in my legs, staying with me throughout those trying times.

The winter months were particularly challenging, as the cold made the swelling and pain in my hands and wrists worse to the point where I was unable to write or perform simple tasks necessary for my academic pursuits. I owe a debt of gratitude to the healthcare team at Augusta University, especially my team of doctors and nurses who were steadfast in their support during my most trying moments. Their presence was a beacon of hope during a time when my family and I were navigating uncharted waters, grappling with the impact of lupus on our lives.

In 2015, I was selected as one of five patients in the United States to participate in a clinical trial for the infusion drug Benlysta, aimed at getting the drug approved in pediatric patients living with lupus. With conventional medications yielding limited results and my pain persisting, my family and I embraced this opportunity without hesitation. While during the initial phase of the trial I did not know if I was taking a placebo or the real medication, the marked improvement in my health provided reassurance that I was receiving the actual drug, By December 2016, it was confirmed that I was indeed receiving Benlysta.

I continued to receive treatments in Augusta until November 2021, when acceptance into medical school altered the dynamics of my schedule. The transition brought challenges, including navigating the complexities of Medicare/Medicaid coverage, which ceased in October 2023 due to a court ruling that deemed me non-disabled based on my ability to pursue medical education without impediment. Despite numerous appeals, the decision remained unchanged, compelling me to seek alternative insurance coverage.

The transition to another health plan wasn't seamless. The switch came with restrictions on infusion services forcing me to explore different avenues. After weeks of perseverance and countless calls, I found myself back at my initial infusion center. However, the support from my nurse and the intervention of Benlysta's assistance program alleviated the financial burden, enabling me to resume treatments in January 2024.

Remarkably, since resuming treatments, I have not experienced any flare-ups. I’ve incorporated a few self-management strategies from resources offered by the ACR’s lupus self-management guide, like exercising, eating -well and implementing stress management techniques.

I’ve made a few lifestyle adjustments, including eliminating pork from my diet and embracing regular exercise, which have undoubtedly played a pivotal role in managing my condition. Meeting my boyfriend Rashad, who also battles lupus, inspired me to prioritize physical fitness, starting with leisurely walks and culminating in rigorous gym sessions. Together, we motivate each other to set and achieve fitness goals, celebrating each milestone along the way. These changes significantly contributed to a reduction in lupus flares.

View Janya’s video and other RDAM self-management resources >

Learn more about ACR’s The Lupus Initiative self-management resources >