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Tracy Evans never anticipated that a quiet medical history would spiral into a life-altering condition. Diagnosed with IgA Nephropathy (IgAN), a rare kidney disease in which the kidneys are damaged by the accumulation of the antibody IgA, Tracy’s life took an unexpected turn that led her to become an advocate for others facing similar struggles.  

Through her Facebook group and personal journey, Tracy remains dedicated to fighting for her health and raising awareness of the disease.

A Sudden Diagnosis

For years, Tracy had been monitored for various health issues, including immunoglobulin A deficiencies that plagued her childhood. Having experienced frequent infections, she’d received regular immunoglobulin injections. As she got older, the symptoms remained dormant, but Tracy still faced a myriad of medical challenges, including diabetes, recurrent urinary tract infections (UTIs), and kidney infections.

In March 2023, things took a dramatic turn. Tracy suddenly developed severe leg pain and swelling, which she initially dismissed as something minor. But after a painful flare-up that felt like “acid being poured” on her skin, her symptoms intensified. She was in excruciating pain and soon began to feel flu-like symptoms that would change her life forever.  

“I couldn’t move or get out of bed,” Tracy recalled. “I felt like I was dying.” Her condition deteriorated quickly—she experienced acute kidney failure, with her GFR (glomerular filtration rate) dropping to an alarming 11 and her creatinine levels soaring over 5. She was hospitalized for two weeks, during which she received dialysis.  

She was then diagnosed with IgAN.

Navigating the Emotional and Physical Toll

The disease has not only taken a physical toll on Tracy but also an emotional one. Once a busy, active person with a fulfilling career, Tracy now faces limitations that impact her daily life. She has had to go on disability and struggles with shortness of breath, fatigue, and weakness. “I can’t get around very well,” she said, “I sometimes use a wheelchair when running errands or a walker for shorter trips. But even just getting to my doctor’s appointments has become incredibly difficult.”  

Despite these challenges, Tracy remains focused on her family and her faith. She has two children, a 24-year-old and a 17-year-old, who she remains very close. However, she mourns the loss of the adventure she once had with them. “I miss being able to go to the beach or dinner together. It’s hard to see my 17-year-old go off to college when I can’t keep up with her,” Tracy said, fighting back tears. “I wish I could do more.”

In addition to her personal struggles, Tracy faces the added stress of managing her medical care. With a slew of specialists, from rheumatologists to nephrologists, Tracy often feels caught in a web of miscommunication between her doctors. “It’s frustrating because I feel like they’re not working together. I’m doing everything I can to stay on top of it, but it’s exhausting,” she explained.

Advocacy and Community Support

Tracy has found strength in connecting with others who understand her pain. She created a Facebook group focused on IgAN. With about 230 followers, this advocacy group is a space where Tracy shares helpful tips—like recipes for kidney-friendly diets and advice on navigating medical care. “Before I was diagnosed, I had no idea what IgAN even was,” Tracy admitted. “Now, I want to help others going through the same thing. It’s also a way for me to stay proactive, and I enjoy sharing my story because it helps others realize they’re not alone.”  

In addition to her role as an advocate, Tracy has participated in research about IgAN treatments and actively follows clinical studies. While she remains cautious about experimental drugs, Tracy believes in the importance of being involved in research to help future patients. Her determination to stay informed and share her knowledge is a source of empowerment.

A Vision for the Future

Her vision for the future includes raising awareness through 5K runs and fundraisers, and leading speaking engagements. “I hope to speak at conferences one day, share my story, and give people hope. It’s possible to live a long time with kidney disease—even with dialysis or a transplant, there’s still hope,” Tracy says, her voice filled with determination.  

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