Explore the journey of Jaime Miller, physician scientist diagnosed with systemic lupus erythematosus, who is leveraging her medical expertise to empower others through the Lupus Foundation of America. 

In 2018, I was diagnosed with systemic lupus erythematosus while I was training to become a physician-scientist in hematology and oncology. To say I had no idea what those with lupus went through would be an understatement. Being diagnosed with a debilitating chronic illness during the peak of my medical career was both scary and isolating as there weren’t many people that surrounded me that knew about lupus. 

Therefore, I sought out an organization that could provide me with resources for lupus advocacy, education, and support. With this goal in mind, I discovered the Lupus Foundation of America (LFA). At this point, I’d estimate that I have been working with them for about 5 years. I thought having a medical and basic science background would make me an excellent candidate for helping the LFA strengthen the voices of those with lupus in both the medical and local communities. 

Knowing that lupus limits the amount of energy we have to expend on everyday activities, I try to fundraise every May and raise lupus awareness on social media. I try to offer valuable information to both patients and physicians. I have organized fundraisers and led a local team here in Pittsburgh for the Walk to End Lupus Now. 

I try to use my ties to the medical community to strengthen patient voices and advocate for those who feel disempowered by this horrible illness.

I cannot imagine what it's like to have lupus without knowledge of what it is and can do, so I try my best to help mitigate these feelings of loss through advocacy and education. For example, I have given educational talks to remote communities, such as the Amish, which do not have the same resources we may have locally. I have given talks at the Lupus Summit in Washington D.C. on increasing minority enrollment in clinical trials and created templates for local constituents to use when lobbying for lupus research. 

It makes me feel grateful to be part of a foundation that has helped so many with lupus.

Looking ahead, I am hoping to become a support group facilitator which will be the first time that the LFA will be officially represented in the area of Pittsburgh. I am hoping to coordinate and plan events and fundraisers in the future. My loftiest goals include starting a scholarship for young people with lupus and an emergency fund for those recently diagnosed and struggling financially. I found that the sudden loss of income and insurance for those forced onto disability or, in the worst case, terminated is one of the most stressful parts of garnering a lupus diagnosis. It is one illness that truly causes a life-changing upheaval in a person’s life almost overnight. 

If I can do something to make this transition easier for someone accepting a new life with lupus, I would do anything in my power to do so within the limitations of my capabilities.