From Quiet Symptoms to Collective Strength:

How IgA Nephropathy Shaped Ruchi Ambike’s Path to Advocacy

Ruchi AmbikeSpeech-language pathologist, mother of two, and patient advocate living with IgA nephropathy
From Quiet Symptoms to Collective Strength: How IgA Nephropathy Shaped Ruchi Ambike’s Path to Advocacy
Condition: IgA Nephropathy (IgAN)
Diagnosed with IgA nephropathy in her late 20s, Ruchi Ambike spent years managing a rare kidney disease that progressed quietly while she built her career and raised a family. As treatment access gaps and disease progression became impossible to ignore, she transformed personal uncertainty into purpose—creating community, amplifying patient voices, and advocating for equitable access to care across Canada.

When Ruchi Ambike was diagnosed with IgA nephropathy (IgAN) in 2001, she didn’t realize how profoundly it would shape her life. IgAN is a rare autoimmune disease in which the body’s immune system attacks the kidneys, often progressing quietly for years before causing noticeable symptoms.

After moving for graduate school, routine urine testing by a new physician revealed protein and blood that had never been investigated. Within weeks, she was referred to an internal medicine specialist, then to a nephrologist, and soon after underwent a kidney biopsy. The diagnosis was IgA nephropathy. “That was it,” she said. “I was told the name, but not much else.”

Living in the Unknown

Ruchi relied almost entirely on her nephrologist for guidance. Treatment focused on managing her blood pressure. There were no conversations about nutrition, lifestyle changes, or long-term planning. “I didn’t know enough to be worried,” she said. “I felt fine.”

Her kidney function was strong then: stage one, with a glomerular filtration rate (GFR) around 105. Life moved forward. Ruchi married, built her career as a speech-language pathologist, and became pregnant with her first child.

That pregnancy became the moment when the reality of her diagnosis could no longer be ignored.

After developing severe preeclampsia, Ruchi spent nearly 10 days hospitalized following delivery. During that stay, a different nephrologist was consulted. “In one conversation, she gave me more information than I’d received in years,” Ruchi said.

A Second Pregnancy and Progression

Ruchi’s second pregnancy came sooner than planned, before her body had fully recovered. Preeclampsia returned, though this time the risks were anticipated and carefully monitored.

Still, the toll was real.

By 2010, Ruchi’s kidney disease had progressed to stage three, where she stayed for many years. Her protein levels remained relatively stable, which slowed further decline. Physically, she still felt well. As a mother of young children, her focus stayed firmly on her family. “I didn’t feel sick,” she said. “So it was easy to push it to the background.”

A New Reality

Even though Ruchi had been so careful, she ended up being exposed to COVID-19 and noticed a shift in her lab results. Her kidney function began to decline more rapidly, and she entered stage four chronic kidney disease.

Treatment options in Canada remained limited. Care continued to focus on symptom management. Some newer medications were prescribed off-label, but often at significant personal cost. “I hit a wall,” Ruchi said. “Emotionally and physically.”

During one appointment, she broke down in tears. “My nephrologist cleared the room and listened,” she said. “Together, we made a plan: begin preparing for a kidney transplant.”

The idea of asking for a living donor felt overwhelming. With a friend's help, she shared her story publicly. Five people volunteered to be evaluated. “Just knowing people were willing—it changed everything,” she said. “It gave me hope.”

From Isolation to Advocacy

For years, Ruchi had never met another person living with IgA nephropathy. That changed in 2023, when she discovered the IgA Nephropathy Foundation in the U.S. and attended a patient symposium in Washington, D.C. “Walking into a room filled with hundreds of patients and caregivers was overwhelming—in the best way,” she said. “Everyone understood. I’d never experienced that before.”

What began as a personal search for connection became something larger. Ruchi became the Foundation’s first Canadian patient ambassador and began building a community. She launched a Canadian Facebook group, organized awareness events, and collaborated with the Kidney Foundation of Canada to expand patient education nationwide.

Living Forward

Today, Ruchi balances life as a mother of two teenagers, a healthcare professional, a patient preparing for transplant, and a national advocate. She continues to push for treatment access and equity, meeting with Members of Parliament and serving on the Canadian Society of Nephrology Advocacy Committee.

Her advice to newly diagnosed patients is simple but hard-earned: advocate early. Ask questions. Seek support. And don’t assume feeling “fine” means everything is fine. “If I could go back,” she said, “I’d focus more on my health from the start—nutrition, self-care, balance. Not out of fear, but out of respect for my body.”

Despite the uncertainty ahead, Ruchi remains grounded in what brings her joy: family, friends, travel, reading, and meaningful work. “I don’t know exactly what’s next,” she said. “But I know I’m not facing it alone.”

In one conversation, she gave me more information than I’d received in years.— Ruchi Ambike
Ruchi AmbikeAbout Ruchi AmbikeRuchi Ambike is a speech-language pathologist, mother of two, and patient advocate living with IgA nephropathy. She is the first Canadian patient ambassador for the IgA Nephropathy Foundation and has played a key role in building a national patient community through education, awareness events, and collaboration with kidney health organizations. Ruchi serves on advocacy initiatives focused on treatment access and equity, including the Canadian Society of Nephrology Advocacy Committee. She continues to advocate for patients navigating rare kidney diseases while preparing for a future kidney transplant. View Instagram Profile

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