Jordan J.

In 2012, at the age of four, Jordan James was diagnosed with Nephrotic Syndrome. He was living a “normal” life in Los Angeles, California until he started experiencing swollen eyelids. Initially misdiagnosed with allergies, the swelling quickly progressed, making it difficult for him to open his eyelids. Eventually, the swelling spread to his abdomen. Within two weeks, he was diagnosed with Nephrotic Syndrome by his pediatrician and was referred to a nephrologist at Cedars-Sinai Hospital.

Jordan had to adapt to a “new normal” way of living and responded well to steroids initially, giving his family hope that he would outgrow his condition after reaching puberty. However, over time, he became dependent on steroids and experienced three to four relapses per year, each with different challenges in managing his illness and emotions. Some relapses were severe, resulting in hospital stays for edema, low albumin, low protein levels, and hydration. Despite the challenges, Jordan responded relatively well to the recommended treatments, and a biopsy was not deemed necessary at that time…

As Jordan’s condition progressed, his family realized it was time to change the treatment approach and explore new options. He tried several other medications, but the side effects were too harsh, causing severe abdominal pain, muscle aches, headaches, dizziness, and brain fog. Eventually, Rituximab was suggested, and it proved to be successful, granting him a 15-month remission. He continued managing his condition with Rituximab and Tacrolimus until the COVID-19 pandemic began.

During the two-year pandemic, Jordan experienced his best remission rate with only Tacrolimus as maintenance medication. However, in November 2022, he unfortunately relapsed and has since experienced another relapse in March 2023. Currently, Jordan is in fairly good health and is managing his condition with Tacrolimus, while also navigating his first year in high school. Despite the chronic nature of his disease and the side effects from medications, Jordan remains resilient and makes time to enjoy his interests, such as golf, his afterschool tech program, a weekend business program at UCLA, and his involvement in the L.A.M.P. mentorship program. He also advocates for himself and others with Nephrotic Syndrome, rallying family and friends to participate in NephCure’s Annual LA Walk in Santa Monica, CA.