By Brittany Curry, 32, as told to Keri Wiginton
For years, doctors knew something odd was going on with my kidneys. But it took several nephrologists, an international move, and close to a decade to find out what.
I was diagnosed with IgA nephropathy (IgAN) in 2024, just before I turned 30.
Getting an answer didn't feel like a relief at first. I went to a really dark place mentally. I have a husband and a young son. And when you search chronic kidney disease online, you tend to find the worst-case scenarios. I kept thinking: I'm going to die.
But I still wanted to work, go to school, and do big things with my life. I'm also responsible for somebody's childhood. I wanted my son to grow up remembering a mom who was present and still living her life.
So I changed the way I thought about my diagnosis. Instead of "I live with IgA nephropathy," I started thinking, "IgA nephropathy is going to live with me."
The Long Road to a Diagnosis
My husband is active-duty military, and my kidney problems started when he was stationed in Germany. I was about 20 or 21 and kept having what felt like urinary tract infections, although they weren't actually UTIs.
My military doctor at the time happened to have a special interest in kidney health. He found protein and blood in my urine and sent me for more testing. A bladder scope looked normal, but the blood and protein kept showing up.
Our military hospital didn't have a nephrologist. I'd have to see a kidney specialist in the German healthcare system. I'd never really had medical problems before. Now I was trying to figure all this out in a country where I didn't speak the language. That was scary.
The first nephrologist thought I had thin basement membrane disease, a condition that often causes blood in the urine. He told me it probably wouldn't get any worse.
My military doctor didn't agree, so he sent me for another opinion. That nephrologist came to a similar conclusion as the first. Nobody pushed for a kidney biopsy. Honestly, I was young, and sticking a needle into my back didn't sound like a good time. I was happy to leave it there.
Even My Pregnancy Seemed to Say Everything Was Fine
I found out I was pregnant while still living in Germany and getting ready to move back to the United States.
Because I already had blood and protein in my urine, doctors watched my kidneys and blood pressure closely. Once we were back in the U.S., I continued to get high-risk pregnancy care at Walter Reed in Maryland.
My urine tests actually improved during pregnancy. The protein and blood went down, my blood pressure stayed normal, and I carried to term. I gave birth to a 9-pound baby boy at Fort Belvoir in Virginia.
That seemed to support the idea that whatever was happening with my kidneys would stay stable.
For years, I also never had the symptom people link with IgA nephropathy: dark or cola-colored pee after getting sick. Even when I went through about a year of recurrent strep and laryngitis and eventually had my tonsils removed, my urine always looked normal to me.
Later, my kidney labs worsened. Another nephrologist suggested a biopsy, and I agreed. The experience was awful.
I'd already told them I had severe medical anxiety. The hospital planned to do the biopsy without sedation, so my military doctor gave me Valium beforehand. The surgical team kept me waiting long enough that it wore off before the procedure started.
I threw up midway through the biopsy. The doctor yelled at me and said he could lacerate my kidney if I kept moving. I told him, "Get the needle out of my back. We're done."
The Biopsy That Finally Gave Me an Answer
We moved to Hawaii in 2023, and I started seeing a new nephrologist. He watched my labs for several months before telling me he thought I had IgA nephropathy and needed a biopsy.
I told him about the first attempt. This time, he arranged sedation. I barely remember the procedure.
The biopsy confirmed IgA nephropathy along with secondary minimal change disease, chronic scarring, and atrophy. It also showed damage to my podocytes. Those are kidney cells that help keep protein from leaking into the urine.
My eGFR, an estimate of how well my kidneys filter blood, remained good. I felt fortunate. Now we needed to find a treatment that could help protect my kidneys.
My doctor wanted me to try Filspari (sparsentan), a once-daily pill that can help slow kidney function decline in adults with IgA nephropathy. It was still fairly new, so I wanted it to be on the market a little longer. We tried other treatments first, but my urine protein kept climbing.
Eventually, I agreed to try Filspari. I took it for a little under a year before stopping. While I was on it, I developed severe anemia. My red blood cell count dropped low enough that I came close to needing a blood transfusion.
At first, doctors didn't know what was behind the anemia. I had an endoscopy, colonoscopy, and full workup with a hematologist to look for causes. When my blood counts kept dropping, my hematologist identified Filspari as a less common cause and recommended I stop taking it.
My nephrologist pulled me off the medication. Within about four weeks, my blood counts were back to normal.
Around the same time, my nephrologist developed health problems and retired. That scared me. I live on an island, so my choices for kidney care are limited. And when you have a chronic disease that needs specialized care, having a doctor you trust is a big deal.
Advocating for Myself
The nephrology clinic transferred my care to the other nephrologist there. I didn't get to choose who I saw. But by then, I'd done a lot of research. I had a better idea of what mattered to me when choosing treatment.
I work in veterinary medicine. It's kind of the same as human medicine, but not really. Still, I'm comfortable reading medical information and asking questions.
I told my new nephrologist I wanted to avoid treatments that'd strongly suppress my immune system. I have a school-age child. I want to work. I want to go to veterinary school. I want to live as normal a life as I can.
We decided on Voyxact (sibeprenlimab), a shot I take every four weeks. It's approved to reduce protein in the urine in adults with IgAN at risk of disease progression.
At first, my urine protein stayed just below the cutoff my insurance required for coverage. We appealed and went back and forth for a while. Then one day I called my doctor and said, "I don't feel good. I feel like my protein is through the roof."
Fatigue is usually the biggest sign something is off. Sometimes I lose my appetite. Other times I just feel different from my baseline. After living with kidney disease for a while, I've learned to notice when something shifts.
There've been other times I've gone in for labs with a hunch about what the results would show. I've been right almost every time. That day, repeat testing showed that my urine protein had climbed high enough to meet my insurance requirement.
My urine protein dropped by a little more than half three weeks after I started Voyxact. I don't love giving myself a shot every month. But it's doing what it's supposed to do, so that feels like a small sacrifice.
Managing Kidney Disease and Daily Life
Stomach bugs can be a big trigger. If I start throwing up, I know I need to pack a bag and head to the hospital. Dehydration hits me hard. I can have a sudden drop in kidney function. The hospital generally keeps me for supportive care and watches my kidneys while I recover.
My urine can also turn cola- or coffee-colored from blood after I'm sick. It's strange. I went for years without ever seeing that symptom. Now I know exactly what it looks like.
Kidney disease has also made me more aware of what I eat and drink. I try not to go crazy with salt or processed food, and I stay hydrated.
My previous nephrologist and I disagreed about caffeine. I told him I'd drink more water, but I'm not giving up caffeine. That's not happening.
I also love steak. Before my diagnosis, I ate it maybe three or four times a week. Now I have it once or twice a month. For me, moderation works best. I tried restrictive diets. These days, I try my best to eat healthy and call it a day.
Mostly, my days look relatively normal. I don't take that for granted.
I'm a civilian at an Army veterinary clinic. I truly love what I do. On a busy day, I might help with appointments or anesthesia, run or pull labs, or do anything in between.
Then I go home, where I'm a wife and a mom. There are school routines, dinner, homework, running around, and spending time together. We also have a 5-pound Chihuahua named Pumpkin Spice and two cats, Sashimi and Birkenstock.
My son has grown up with my appointments, medications, and hospital visits. I've always been honest with him in an age-appropriate way. He sees the days I'm worn out and need to rest. He also sees what I'm capable of and what I still do.
Kidney disease is something our family lives with. But I want his childhood to be about so much more than that.
Grieving the Life I Thought I'd Have
When you're in the trenches, it can be hard to put a name to what you're feeling. Looking back on those early dark days, I think I was grieving.
Before, I thought of myself as extremely capable and independent. I had big dreams and goals. I never imagined my body might put limits on what I could do.
I went from thinking about everything I wanted for my life to feeling like I was literally fighting for it. I became hyperaware of every symptom. I obsessed over lab values. The appointments, blood draws, and medications were mentally exhausting.
For a while, I shut down and pulled away from people. I didn't want to talk about what was happening.
Eventually, I started opening up to a few really good friends. I leaned more into my faith and found community. I put more energy into enjoying my work and looking for the little, tiny silver linings in regular days.
I'd still love to become a small-animal veterinarian, and vet school will always be a goal. Right now, I'm slowly picking up classes and taking things day by day. I've accepted that my future may look different than I pictured. And that's OK.
My biggest goal is to be a present, healthy mom and give my son a good childhood. At the end of the day, he's the dream and my proudest accomplishment.
Why I Talk About Chronic Illness
I'm not trying to be an influencer. I started sharing my story because IgA nephropathy can be incredibly isolating. I look healthy. Most people see me living a full life and have no idea what goes into managing my health.
When I first looked online, I didn't see many people whose lives looked like mine: People managing chronic illness while having goals for school, work, and family. But then I realized how many were having experiences like mine.
If talking openly and candidly about the messy parts of my life helps one person feel less alone or gives them a glimmer of hope, I'll keep sharing.