06/18/2026
My lupus story started earlier than most people diagnosed with lupus. My first encounter with the disease happened in 2014 when I was only four years old during what was supposed to be a normal family cruise to Alaska. During the trip, I began experiencing recurring fevers and unexplained rashes. Strangely, the symptoms disappeared after we reached the Alaskan glaciers. No one could have imagined that these early symptoms would become the beginning of my journey with lupus.
Later that year, I was admitted to a children’s hospital in Beijing. It was there that my parents first heard the words that would change our lives: I had lupus. To my parents, I was far too young for such a serious autoimmune disease, and they hoped it was simply a misdiagnosis. However, during the winter of 2016, when I was six years old, everything changed. What once seemed like random fevers and temporary rashes became impossible to ignore. My face was constantly covered in butterfly rashes and layers of topical steroid creams. I was officially diagnosed with DLE lupus at CHEO.
Though I did not fully understand what lupus was, I understood the feeling of being different. What should have been a carefree childhood slowly became filled with hospital visits, medications, and uncertainty. As a young child, I never understood why I was so sensitive to the sun, why I had to wear a hat, or why I had to be different from everyone else. Growing up, wearing hats and covering my face because of photosensitivity set me apart from others during the summer, making me feel isolated and alienated.
Up to that point, I had never met anyone else with lupus or even heard of it, which often made me feel like I was the only one. This became especially apparent when classmates asked about my rashes or hats. I never knew how to explain my condition beyond saying that I was “sensitive to the sun.” It was the simplest answer I could give because I did not understand it myself. Soon, the hat became something I dreaded wearing—and still do. My condition felt like a black void, and all I knew was that the sun was a trigger.
I didn’t dislike the hat because it was ugly; I disliked it because it was a constant reminder of my condition. It felt like a burden I wanted to remove the moment I entered a building. It reminded me that I wasn’t like the other kids who could enjoy the sun freely. Even today, I sometimes try to blend in and conceal the fact that I have lupus, despite knowing that skipping the hat can lead to painful, itchy rashes. Growing up, my dream was simple: never having to wear a face-covering hat again.
In 2018, at the age of eight, I experienced my first major lupus scare. It began with a high fever and an excruciating headache that led me to the emergency room. Days passed in the hospital surrounded by doctors, tests, and uncertainty, yet no one had clear answers. Eventually, doctors performed a lumbar puncture to help determine what was happening. Although I was under general anesthesia, I could still sense parts of the procedure around me. Feeling unable to move or speak was terrifying for a child my age. After countless hours in the emergency room, doctors feared my lupus had progressed into SLE and begun attacking my brain. At the time, those possibilities filled my family and me with fear. Thankfully, we later learned that this was not the case.
During those years of fear, I slowly realized that the thing that once made me feel different could become a source of passion and empowerment. Instead of focusing on how lupus affected my childhood, I wanted to understand it. I was inspired by the dermatologists and rheumatologists who treated me throughout my journey and witnessed both my struggles and recovery, including severe flare-ups that sometimes made it painful to walk.
Through my experience, I truly believe that having lupus should not make anyone feel different spiritually or ashamed. I hope to influence youth beginning their own lupus journeys and remind them that, although every experience is unique, we travel together on the same “train” alongside other lupus warriors in our community. I have the opportunity to transform this passion into something meaningful by spreading awareness and supporting others living with the condition. By sharing my story, I hope to raise awareness, support others affected by lupus, and encourage young people to embrace their stories with strength and know they are never alone.
Thank you, Eva, for sharing your story of strength and perseverance through these difficult times.
