Ami's Patient Story: IgA Nephropathy

Meet Ami Gopalan, who shares her journey living with IgA nephropathy, a rare autoimmune kidney disease that attacks the kidneys. Diagnosed early and now managing stage 3 chronic kidney disease, Ami discusses the fear of her diagnosis, the lifestyle changes she’s made, and the importance of community and hope through support networks. She advocates for greater awareness, dietary guidance, and access to resources so others facing IgA nephropathy know they’re not alone.

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Transcript:

My name is Ami Gopalan. I live in Chicago with my family, and I’m living with IgA nephropathy.

I come from a place of gratitude because I was fortunate to be diagnosed earlier than most. I’m living with stage 3 chronic kidney disease — not yet at stage 5, where dialysis or transplant would be required.

I vividly remember the phone call from my nephrologist fellow. He said, “We got your kidney biopsy results back. Your diagnosis is IgA nephropathy. You have a 50% chance of losing your kidneys in the next 10 years.” I was in shock. I was scared. I felt very alone and overwhelmed. Hearing that I had a rare, incurable disease was incredibly difficult.

IgA nephropathy is an autoimmune kidney disease where the body attacks its own kidneys. Everyone produces IgA, but in people like me, the IgA is deficient — missing something — and it forms complexes that attack the kidneys. The only way to diagnose IgA nephropathy is through a kidney biopsy, which reveals these deposits on the kidneys.

In my case, routine lab work showed high serum creatinine levels, which led my provider to refer me to a specialist. After further testing and a kidney biopsy, I began a six-month course of IV and oral steroids. Fortunately, my condition is currently well controlled. Still, there’s always uncertainty — I never know when it might return. I go in regularly for bloodwork to make sure the disease hasn’t reactivated.

I’ve completely changed my diet. I’ve learned that animal-based proteins can be particularly harmful, so I’ve had to adjust my meals and spend a lot of time meal prepping. Socializing over food has become more intentional — I have to be mindful of every choice I make.

I believe there’s an opportunity for healthcare providers, managed care organizations, and population health leaders to do more — especially in supporting patients through lifestyle and dietary changes. These changes can make a difference at every stage of chronic kidney disease.

For anyone newly diagnosed: you are not alone. I didn’t know anyone with this disease at first, and it wasn’t until I connected with the IgA Nephropathy Foundation that I found my second family. This community of patients and caregivers truly believes that no one should face this journey alone.

The future is bright. Several new drugs have been approved, with more in the pipeline and innovative treatments on the horizon. We understand so much more about this disease today — and that gives me hope.

I’m Ami Gopalan, and I’m living with IgA nephropathy.