Takeda | Living with IgA Nephropathy: Hope and Support
Hope, Resilience and Community: Stuart's Journey with IgA Nephropathy
This article features a real patient sharing his personal experience in his own words. Individual experiences may vary. This information is available to the general public for disease awareness only; it should not be used for diagnosing or treating a disease. Please consult your health care provider for advice.
This article is developed by Takeda. Stuart received compensation from Takeda for his participation.
Stuart was in his twenties when an unexpected test result set him on a long and winding journey with IgA nephropathy, a lifelong progressive autoimmune disease that causes irreversible damage to the kidney function.1 Forty years later, there is still no cure, and despite available treatments, approximately one in five patients experience renal failure within 10 years of diagnosis.2
Watch the videos below as Stuart shares his journey – from the first appointments to a second career helping advocate for others with IgA nephropathy.
When did your journey with IgA nephropathy begin?
"My journey with IgA nephropathy began in 1985. My wife and I had just got married. We decided to apply for life insurance, and a nurse came to the house and did a blood test and a urine sample.
About a week later, we got a call back saying I had been denied coverage, and when I asked them why, they told me that I had some blood and protein in my urine and I needed to go see a doctor.
I was 25 years old and very healthy – never been to a hospital, never really had any health issues before – so it was a big surprise."
How were you eventually diagnosed with IgA nephropathy?
"I went to see my primary care physician at that time, and they recommended I go see a urologist and they put me in the hospital for a day. They did a test called IVP [intravenous pyelogram], which was really designed to test if my bladder was working properly or not. And the test came back perfectly normal.
They decided that just for me, you know, some people have a little bit of protein or blood in the urine and it's normal. And that was the case. They didn't even look at my kidneys or talk about anything else.
When we moved to Atlanta, I saw a new primary care physician and he did some tests and he told me, “I don't care what anybody else has ever told you, you need to get to see a nephrologist as fast as you can.”
It wasn’t until I got to see a nephrologist and they told me my kidney was functioning at like 56 percent that I knew something was wrong.
At that point, the original time I met with my nephrologist, they didn't really know what was wrong with my kidney, but they said that I would need to do a kidney biopsy to truly find out what the cause is.
[The] biopsy itself wasn't so bad, but getting the diagnosis was one of the worst days of my life."
What happened when your kidney function declined further?
"Once my kidney function dropped below 21 percent, which is the time you can get on the transplant list, that's when things really changed. I did not want to go on dialysis. I'd met some people on dialysis and it's a very difficult way of life and I want to try to find a living kidney donor.
At the time I got diagnosed and my kidney function was less than 21 [percent], the average wait time for cadaver kidney in Georgia was seven years. So it was a pretty long time, you know, over 2.5 years from the time I qualified to get on the list of the time I got my kidney."
How has having IgA nephropathy changed your outlook on life?
"It changes your perspective a little bit. When you know that your life is going to be probably a little shorter than it may have been prior to the diagnosis, you maybe take a little bit more risk in life. You do things that maybe you wouldn't think you'd have time to do and you just try to be your best person."
What would you tell someone who’s newly diagnosed with IgA nephropathy?
"Ask as many questions as you can, be your best advocate. Do as much research as you can. There's been a lot of research on the disease and what causes the disease and how you can help perhaps delay some of that progression.
Looking back, if I had known what I know now, I would ask a lot more questions and maybe I could have, you know, made my kidney last a little bit longer."
What role has community played in your journey?
"It took me 12 years from the time I got diagnosed to the time I met another patient living with IgA nephropathy, and it has changed my life meeting other patients that are going through the same journey that I was going through.
Everybody deals with IgA [nephropathy] little differently or effects everybody a little differently but just knowing that there's a community out there of people who understand what you're going through and how you feel physically and mentally makes all the difference in the world."
Is that why you became a patient advocate?
"I went through a very difficult time in my life when I got diagnosed with IgA [nephropathy]. And here I am 25 years later, being able to sit in front of you and share my story.
If that means I can help somebody else navigate that journey and make it easier for them and ask them and teach them how to ask the right questions and make them feel like they're part of a community, I think that's the least I can do."
References
- Cheung CK, Alexander S, Reich HN, et al. The pathogenesis of IgA nephropathy and implications for treatment. Nat Rev Nephrol. 2025 Jan;21(1):9-23.
- IgA nephropathy. National Institutes of Health. https://www.niddk.nih.gov/health-information/kidney-disease/iga-nephropathy#what. Accessed January 2026.
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