Ethan C.

Ethan was diagnosed with Nephrotic Syndrome when he was only 8 years old. His parents noticed that he had gained weight but they thought it was because he was finally putting on some pounds after being a very slender child. However, one night, he complained of painful urination, and his pelvic area appeared bloated. Ethan’s parents took him to the doctor, expecting a urinary tract infection, but were surprised to learn that Ethan had very high protein levels in his urine. He was then diagnosed with Nephrotic Syndrome, a condition they had never heard of, and had no idea what challenges lay ahead.

Ethan’s albumin level was only 10 g/L, so he was hospitalized for a transfusion. After a week on high-dose Prednisolone, his proteinuria and edema started to improve. However, he continued to experience relapses, mostly associated with mild illnesses. Each relapse seemed to take longer and require higher doses of steroids to get move into remission, and it became clear that he was steroid-dependent. To avoid stronger second-line drugs, Ethan’s family tried eliminating major allergy triggers from his diet, such as gluten, egg, dairy, citrus, and eventually all grains were eliminated. They also explored alternate Chinese herbal therapies, including high-dose turmeric, but unfortunately, he still continued to relapse just as badly, if not worse.

In July 2013, Ethan was admitted for another albumin transfusion, and, much to their relief, a biopsy indicated Minimal Change Disease. He was started on Cyclosporine, which allowed him to taper off steroids and achieve two years of remission. However, the medication stopped working for him in September 2015…

He then tried MMF for ten months and was finally put on Tacrolimus, which did not work as well as expected. In July 2017, he received a Rituximab infusion that gave him nine months of remission. Since May 2018, Tacrolimus (post-Rituximab) has worked better for Ethan, leading to fewer and less severe relapses. He even managed to avoid relapses during COVID-19 protections, giving him a respite from Prednisone. Ethan has had 35 relapses so far.

Ethan’s diagnosis inspired his sister, Ella, to pursue the sciences, leading her to become a medical student and advocate for chronic kidney patients. Since 2013, the siblings have been actively involved in promoting NephCure Kidney International via Ella’s YouTube channel Sci Files. Ethan developed an early interest in computer programming as he spent a lot of his treatment time playing video games and learning to code. In high school, Ethan’s experience with Nephrotic Syndrome inspired him to develop a urine albumin detection device which he presented at several science fairs. He won national recognition at the Canada Wide Science Fair and was an International BioGENEius Challenge finalist in Philadelphia.

Ethan is now in his first year of Engineering at the University of British Columbia. He feels his disease is more stable than it’s ever been and is optimistic about the future.