Lindsey F.

Lindsey Fuller has a rare form of hereditary C3G. Her grandfather died of renal failure, and her father had four transplants over the course of 20 years. Lindsey began showing symptoms as a child. Unfortunately, C3G wasn’t yet recognized at that time, and there were no answers for her or others in her family. She was assured that hereditary kidney disease was very unlikely. In 2007, at age 25, Lindsey was misdiagnosed with lupus. Her rheumatologist requested a kidney biopsy to help confirm the diagnosis. The biopsy diagnosed post-infectious glomerulonephritis. This diagnosis didn’t make sense with her history or current symptoms, but no physicians seemed to have answers about what was happening. C3G was still not recognized.

Although Lindsey’s kidney symptoms had been mild and mostly stable all her life, she learned in 2013 at age 32 that she was suddenly losing a significant amount of kidney function. About a month later, her son was discovered to have blood and protein in his urine during a well-child physical. He was 9 years old. Lindsey decided to have her original kidney biopsy re-evaluated and was diagnosed with C3G. Genetic testing revealed a novel mutation, which was then found in other affected family members, including her son.

C3G has no FDA-approved treatments, but Lindsey spent the next year and a half researching, learning about her disease, and finding experts to consult. She was eventually able to convince her doctors to try eculizumab in hopes that it would slow her disease progression. By this time, she had stage 4 CKD and felt this was the only viable option for preserving function in her native kidneys. While her doctors agreed eculizumab was her best option, it took 6 months of fights and appeals with her insurance company to get approval for the medication. For the next several years, she traveled 3 hours away every other week to receive this treatment.

Eculizumab was extremely successful for Lindsey and improved her kidney function and stabilized her symptoms. Unfortunately, her underlying disease was still active, and eventually, the drug started to become less effective. By the spring of 2022, she had begun to lose kidney function again and began considering other alternatives for treatment. In August of 2022, she discontinued eculizumab therapy in hopes of completing a 6 month washout period and qualifying for a clinical trial. She began the trial screening process in February of 2023, and if she can successfully qualify, she hopes a new drug might stabilize her kidney function until more treatment options are available for C3G.