Riley C. - Diagnosed at age 22

My story with lupus began when I was young, before I ever knew I would receive the same diagnosis.

My grandfather passed away from lupus after the disease caused liver/kidney failure. I remember participating in the lupus walk here in Utah for him. I was simply a granddaughter walking in support of someone I loved. I never imagined that years later, I would be diagnosed as well.

Because of what happened to my grandfather, lupus has always carried a lot of fear in my family. In my house, “lupus” is almost a bad word. It brings feelings of pain, loss, and fear. Sometimes I keep my struggles to myself because I worry that talking about how sick I am will cause my loved ones to worry or relive what they experienced with my grandfather. That can make me feel very alone.

My own health journey began about five years ago. I was first diagnosed with POTS, which later developed into inappropriate sinus tachycardia. I received several other diagnoses while trying to understand what was happening with my body. I was eventually diagnosed with Ehlers-Danlos syndrome and continued seeing rheumatologists for Raynaud’s.

I always felt that something else was wrong. I repeatedly heard that I did not have lupus, but I could never shake the feeling that it was eventually going to be my diagnosis.

In January 2026, I was tentatively diagnosed with lupus after abnormal lab results. Then my labs returned normal.

In August, everything changed. I experienced one of the worst flares of my life. I developed a malar rash, blood in my urine, swelling and pain in almost every joint, including my jaw, severe fatigue, nausea, vomiting, and hair loss. Everyday activities became difficult because I felt so sick. My labs became abnormal again, and I was officially diagnosed with lupus.

I finally had an answer, but it also brought fear. Knowing what happened to my grandfather makes it difficult not to wonder if I will experience the same things. I know treatments have improved, but it is still scary.

What gives me hope is research. New treatments continue to be developed, and lupus care has already changed since my grandfather was sick. I hope that progress continues.

After five years of searching, I finally have an answer. I am scared of what comes next, but I am choosing to keep advocating for myself and holding onto hope.