My Story

I learned that I had IgA nephropathy in January 2025.

My kidney function had been drifting down for years, but I had no real sense that anything was wrong. My primary care doctor mentioned my kidney function was a little low for my age, but since I felt fine, neither of us treated it like a warning sign. I got COVID again. Labs before my annual checkup a few months later showed that my eGFR (a calculated estimate of kidney function) had dropped sharply, and suddenly my primary care doctor treated it as urgent.

That led to a nephrology referral with a full workup, bloodwork, a genetic panel, a kidney ultrasound, and finally a kidney biopsy. The biopsy showed extensive scarring along with deposition of IgA. My nephrologist described my kidneys as burnt out, with significant scarring, and estimated that I had three to five years before dialysis or transplant due to an autoimmune disease called IgA nephropathy.

The shock hit me incredibly hard. Once I could think straight again, I started reading, trying to separate what I could still change from what I couldn't.

IgA nephropathy is rare, with an incidence rate of only a few people per hundred thousand each year globally. Many patients are diagnosed late, often only after kidney function has already fallen. Historically, about a third of people with this disease progressed to kidney failure within two to three decades if protein in the urine (proteinuria) remained high. For some people, the disease shows itself early; for others like me, it progresses quietly with no outward symptoms. Reading that while staring at my own biopsy report and lab results made everything feel much more real.

If this had happened to me in 2015, just ten years earlier, there would have been only a few options available. Treatment at that time focused on kidney-protective blood pressure drugs and, sometimes, steroids. At the time, there were no IgA nephropathy-specific therapies. Care meant reducing kidney stress, lowering proteinuria, and hoping the disease stayed quiet. Even with this supportive care, many people declined; studies showed that even meaningful proteinuria reductions often failed to prevent many patients from eventually progressing to kidney failure.

In 2025, my nephrologist advised me to cut back on salt, limit alcohol, keep blood pressure controlled, continue to exercise regularly, and consider adjusting protein intake even though the evidence is mixed. But in early 2025, he could also add treatments aimed at the disease itself: one to reduce pressure and strain inside the glomerular filters, and another to lower the production of the IgA that feeds the immune complexes in IgA nephropathy.

I made major lifestyle changes: I switched to a fully plant-based diet and cut out all alcohol. I also watched my sodium and kept a nutrition journal to see what I was actually eating. I did this not because I expected a dramatic turnaround, but because it was what I could do.

I am under no illusions; the medication was, and is, doing most of the heavy lifting.

My labs stopped trending downward. Over the next several months, protein in the urine dropped, kidney function stabilized, and by March 2025, I reached clinical remission.

In those first few months after diagnosis, I felt like my future had narrowed. I was also realizing that my kidneys had been failing quietly while I carried on as if nothing was wrong. In the months that followed, the pattern changed. My kidneys are still scarred. The disease has not gone away. But the trajectory shifted.

While I was referred to a nephrologist far too late to avoid permanent scarring, I was diagnosed at a time when targeted treatment existed and I could access it. That changed what my nephrologist could predict. The original three-to-five-year estimate no longer matches my course.

I didn't expect a better story. I ended up with breathing room, options, and time.

IgA nephropathy can move quickly. If you are newly diagnosed, my patient guide can help you plan what to track and what to ask. If you are a clinician, the treatments page summarizes how quickly options have changed in just a few years.

My goal in creating this site is to share information with other patients and clinicians with the aim of better outcomes for IgA nephropathy patients. I also hope that telling my story supports better research, speeds adoption of and access to modern therapies, and increases true global equity in who receives life-saving treatment for glomerular diseases like this one.

Publications

American Journal of Kidney Diseases

I authored an essay in American Journal of Kidney Diseases (AJKD) titled The Roller Coaster Ride of IgA Nephropathy.

That piece focuses on the emotional, financial, and practical disruption that followed my diagnosis, the steep learning curve around labs, diet, and specialty medications, and the role of advocacy in connecting clinical science with the lived experience of patients and caregivers.

Health Monitor Living

I was also featured in the 2026 IgAN issue of Health Monitor Living, in a cover story titled "There Is Reason to Be Hopeful!" about my diagnosis, treatment, and remission.

The publication is a patient-education magazine focused on practical disease information, treatment options, and living well with chronic illness. The article centers on how late diagnosis, newer FDA-approved targeted therapies, lifestyle changes, and patient advocacy reshaped my outlook after being diagnosed with severe IgA nephropathy.

Disclosures