Alexandra E. - Diagnosed at age 16

I was diagnosed with lupus at 16, but my symptoms began in 2013 when I was living in Ecuador. I had unexplained fevers and anemia that no one could explain. By 2014, things got worse — I had joint pain, a malar rash, constant fevers, and blood tests that made no sense. In Ecuador, lupus is rare and not well understood, so it took two weeks in the hospital before doctors finally diagnosed me with systemic lupus erythematosus (SLE).

After my diagnosis, I moved to Florida for college and treatment. In 2017, I was diagnosed with lupus nephritis. After graduating, I moved to New York City to work, be closer to my sister, and get treatment. In 2021, my nephritis progressed to class 3, and by 2025, I was diagnosed with class 6 — the final stage. Now I’m waiting for a kidney transplant.

Lupus has changed every part of my life. I wake up fatigued, in pain, and often without the energy to do what I love. Daily pills, injections, hospital visits, and countless tests are my reality. Many people don’t understand that lupus isn’t just a “bad day” — it’s a lifelong fight with your own body.

What helps me get through is my family and friends — especially my sister, who is my rock and biggest supporter. The Lupus Foundation of America has helped me so much, too. Hearing other people’s stories reminds me I’m not alone and keeps me going.

Even though my journey has been full of ups and downs, I still have hope. I know my story isn’t over yet — I take it one day at a time and keep fighting. Lupus may be part of my life, but it does not define all of who I am.