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Deborah Kofoed (She/Her)

State: North Carolina

Chronic Condition: Lupus

At the age of 17 I was diagnosed with Systemic Lupus Erythematosus or SLE. My life became about doctor appointments, tests and finding the right medication regimen. I chose working over college because doing both flared my disease. Fighting lupus and all that comes with it is extremely hard and I eventually had to stop working altogether. After moving to North Carolina, I decided it was time to make a difference and become more active in the lupus community. I began to raise awareness on social media, participated in walks and fundraisers and joined my counties support group. I am proud to say I became a youth support group facilitator for the Lupus Foundation of America. It was so difficult not having guidance or support at the time of my diagnosis, now I help the youth with lupus navigate living life with a chronic disease.

Finding out I could advocate virtually on Capital Hill was exciting and after the first summit I knew it was for me. We gave them facts about lupus, told our personal stories of life with lupus and requested funding for the following fiscal year. Since then I have sent emails and have had several meetings with legislation pushing for changes that will benefit patients who are chronically ill. I advocate so patients can continue their healthcare treatment virtually, to reduce barriers so all lupus patients can participate in clinical trials and to help prevent insurance companies from causing delays in receiving the best treatment that their doctor has prescribed. The outcome of those and other bills will greatly impact the lupus community. I’m looking forward to my future as an ambassador for the CDC and advocating for myself and my fellow lupus warriors.