Turning Pain Into Advocacy for Kidney Disease Awareness

Kirsten Uzzardo’s journey with kidney disease began in 1989, when she was diagnosed as a teenager after a bout of mononucleosis revealed her kidneys were functioning at only 30%. Unlike many who discover kidney disease suddenly through emergency hospitalizations, Kirsten had the rare opportunity of early warning. Still, it took years, multiple transplants and numerous biopsies before doctors identified her rare and aggressive form of kidney disease. Her first transplant failed within four months, underscoring the complexity of her condition.

Living with kidney failure brought enormous physical and emotional challenges. Dialysis, she explains, is not just about fatigue but about complete physical shutdown — reaching a point where the body simply cannot function. The treatment also brought strict fluid and dietary restrictions, with life-threatening risks tied to potassium and phosphorus levels. Beyond her own suffering, Kirsten emphasizes the burden on her family: her husband carrying household responsibilities while maintaining employment, and her children growing up in the shadow of her illness. Even after her third transplant, she lives with constant fear — fear of her disease returning, fear of infection due to immunosuppression and even secondary illnesses like breast cancer that she suspects were linked to long-term medications.

Despite these hardships, Kirsten highlights the resilience and strength of her family and her determination to find meaning in her struggle. She turned to advocacy after recognizing the need for systemic change and the lack of awareness around kidney disease. Once her health stabilized enough after her third transplant, she began mentoring others facing dialysis and transplantation, helping new patients and their families navigate the journey she knows so well.

Her advocacy extends to policy. Kirsten is a strong supporter of the New Era of Preventing End-Stage Kidney Disease Act, which aims to reduce kidney failure by improving early detection, awareness and care. She explains that kidney disease often goes undetected because symptoms are vague — fatigue, fluid retention or dizziness can easily be dismissed. Routine tests, like simple blood and urine screenings, are not consistently performed by primary care providers, allowing silent progression until it is too late. The act emphasizes prevention, better patient education, equitable access to care, and investment in underserved communities that face disproportionately higher risks, such as African American and Hispanic/Latino populations. Kirsten also notes the staggering $141 billion annual Medicare costs of kidney disease, underscoring the urgent need for prevention-focused solutions.

Looking ahead, Kirsten hopes for new treatments — especially therapies that could slow or stop her rare disease if it returns. More broadly, she dreams of a future where early detection, better education and medical advances spare families from the devastating burdens hers has faced. Through her advocacy, she channels personal hardship into hope for the next generation of kidney patients.