IgA Nephropathy (IgAN) is a rare and often silent kidney disorder affecting thousands worldwide. Despite its profound long-term implications, it remains widely under-recognized. For Laura Roberts, it wasn’t until she experienced unusual test results during a routine checkup that she learned about this rare disease.  

A Routine Checkup Leads to Uncertainty

Laura’s journey with IgAN began in October 2023. As a person committing to living a healthy lifestyle—regular exercise, good sleep, and eating a balanced diet—she prides herself on being proactive and dedicated. In fact, she historically looked forward to her annual blood tests and urinalysis as they provided useful data to refine her habits. However, this time, the results were not what she expected.  

Her urinalysis revealed trace amounts of protein, a red flag indicating something was amiss with her kidneys. The protein levels had increased after a follow-up test, which was a worrying sign. Although she felt fine and had no symptoms, her doctor referred her to a urologist and a nephrologist for further tests. "I felt fine, normal even, so it was hard to reconcile this news with my reality," she reflected.  

Waiting for an appointment with the specialists stretched for months. When she finally underwent a kidney biopsy in March 2024, the result was both terrifying and illuminating because it confirmed she had IgA Nephropathy. Her kidney function was determined normal, even though she was in stage 1 of chronic kidney disease.  

Despite the news, Laura’s diagnosis was a bit of a relief. "At least I had an answer, though I still didn’t understand what this meant for my future," she said.

Emotional Struggles: A Disease That Doesn’t Feel "Real"

One of the hardest parts of living with IgAN is the emotional toll it takes. This disease often progresses slowly, and many individuals don’t show symptoms until it reaches more advanced stages. The hallmark of IgAN is hematuria (blood in the urine), often microscopic, which can be present for years without a person noticing

For many, like Laura, the condition is discovered incidentally. As a person who values being healthy, Laura struggled to identify with the idea of being sick. "I pride myself on my healthy habits, and it felt strange to think of myself as someone with an incurable, rare disease," she said. "It doesn't feel real to have a condition that shows up only in your labs. You feel fine, but there’s this looming uncertainty because of the results.”

Her work life, rooted in organizational change management, became a coping mechanism during the uncertainty. "We were in the midst of a high-pressure project, and it wasn’t the right time to deal with my diagnosis, so I focused on my work," she recalled. "But eventually, it caught up with me, and I took a step back from work to manage the burnout."

Managing a Rare Disease: Medication, Stress, and Lifestyle Adjustments

Managing IgAN requires continued vigilance. No stranger to implementing healthy practices, but her diagnosis required revising them. "I used to focus on eating a lot of protein and heavy lifting," she said. "I’m more mindful of what my body needs now and adjust accordingly."  

Aside from her physical and nutritional adjustments, she is also adopting new ways to manage her emotional health. "Music has always been a way for me to clear my head—it’s meditative. Since I was a kid, I've wanted to play the drums, so I started playing the drums," she said. "I can’t believe I waited this long. It may be unconventional, but getting lost in the rhythm is therapeutic—it helps me reset mentally."

Finding Support and Community

Few people understand what it is like to manage a condition that isn’t widely known. Laura, however, found comfort and connection through the IgA Nephropathy Foundation. Attending support events and meeting others with the same diagnosis helped her feel less alone.

However, she advises, the key to managing this disease is acknowledging that everyone’s experience differs. "What works for one person might not work for another. The important thing is to listen to your body, adjust your habits, and lean on the support of those who care about you," she said.

Raising Awareness: The Power of Sharing

In her quest to raise awareness about IgA Nephropathy, Laura has shared her experience on her YouTube channel and social media platforms. "I didn’t know about IgAN until I was diagnosed, and I want to make sure others know what to look for," she said. "Please get your annual labs done. Early detection is key."

As Laura continues managing her disease, she remains hopeful for the future despite the uncertainty and looks forward to expanding her drum skills.

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