After living with symptoms such as low-grade fevers, skin rashes, debilitating fatigue, and joint pain for an extended period of time, Phara Policar was diagnosed with lupus in 2004 during her senior year of college, when life is at a person’s fingertips. Similar to many patients with chronic diseases, Phara had the overwhelming desire to live a normal life. She had never heard of lupus before her diagnosis, and for many years, she lived in denial while her health continued to deteriorate. After graduating from college and becoming a communications director, Phara’s condition became so severe that a colleague urged her to seek medical help. Phara’s doctor gave her an ultimatum – prioritize her health or prioritize her career – so she reluctantly gave up her career and was hospitalized for several months to recover and gain control of her disease. Phara credits her doctor for saving her life that day, but she was the one who reinvented herself and gave her life new purpose.

Without the support of fellow lupus patients, Phara struggled to find others who understood the mental, physical, and emotional tolls of the disease. She eventually found the Lupus Foundation of America (LFA), which aims to improve the quality of life for all people affected by lupus through research, education, support, and advocacy. Phara now serves as an ambassador for the LFA, participating in community outreach and education programs as a voice for lupus patients. She has participated in the annual National Lupus Summit and has advocated to Congress for the lupus community. For the last 8 years, Phara has led an LFA support program in partnership with New York University to serve as a safe space for lupus survivors and their families to share their stories and gain access to resources.

Since her initial diagnosis, Phara has developed additional health conditions, such as vasculitis and Raynaud’s syndrome, further exemplifying the need to improve treatment options and support for lupus patients. In fiscal year 2019, she was nominated by the LFA to serve as a consumer reviewer on the Lupus Research Program (LRP) peer review panel. Although she was unsure what to expect of the scientific review process, she soon felt welcome among her fellow panel members as they worked toward the common goal of funding research to understand, prevent, and diagnose lupus and to improve treatments and quality of life of patients. Phara considers her participation on the LRP peer review panel a rewarding experience that has expanded her understanding of the progression and clinical manifestations of the disease. She also feels the CDMRP review process holds consumer perspectives in the highest regard, which ensures the voices of the lupus patient community are heard and taken into account when making funding recommendations. Although the pipeline for advancing new therapies is often long and complicated, the addition of the consumer perspective allows the most needed solutions to be prioritized.

Phara now works as a special court-appointed advocate for children in foster care, as well as with volunteer organizations such as New York Cares. In 2019, she was awarded the Cabot Community Leader Award. Phara continues to advocate for those living with lupus in the hopes of creating better outcomes and improving their quality of life. Her experience with lupus has given her a powerful voice to advocate not only for the lupus community, but also for many others experiencing adversities.

As a result of her lupus journey, Phara says, “Not only have I regained control over direction of my own life, but I also get to be an example of what is possible for others who are still navigating their way through this experience.”

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy, or decision.