Nevada Donor Network’s Advocate for Life, Kirsten Uzzardo, began her journey with kidney disease in 1989. She was diagnosed as a teenager after mononucleosis revealed her kidneys had only 30% function. Unlike many who discover kidney disease suddenly through an emergency visit to the hospital, Kirsten had the rare opportunity of an early warning. It took many years of doctor visits, hospitalizations, multiple kidney transplants and numerous biopsies before doctors identified her aggressive and rare kidney disease. Kirsten’s first transplant failed within four months, which foreshadowed the complexity of her condition and what her journey to stay alive would look like in the future.
Living with kidney failure has brought many emotional, mental and physical challenges into Kirsten’s life. When she has been on dialysis, she is not only exhausted, but her body completely shuts down and cannot function. Unfortunately, because Kirsten’s body had this type of reaction to the treatment, doctors enforced strict fluid and dietary restrictions with life-threatening risks tied to phosphorus and potassium levels. Aside from the anguish she goes through emotionally, mentally and physically, her condition is a huge burden on her family. Kirsten’s husband carries the household responsibilities while maintaining full-time employment. She also feels that her children have grown up in the shadow of her illness. Even after her third transplant, Kirsten and her loved ones live in constant fear that her disease will come back, that she will catch some type of infection due to immunosuppression or even a secondary illness like cancer that are linked to long-term use of anti-rejection medications.
This is why, about a month ago, Kirsten decided to visit Washington D.C. to share more about her rare kidney disease story where she advocated for H.R.1518, which is the New Era of Preventing End Stage Kidney Disease Act. Introduced by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), this act has the potential to bring positive changes when it comes to studying, treating and understanding rare kidney diseases. This legislation aims to help people by finding and treating these diseases earlier while also enhancing the education of doctors and patients through more research. The hope is that this act will lessen the impact of rare kidney diseases on people’s lives along with reducing costs for the health care system and patients in the long run.
Kidney disease affects 37 million individuals in the United States which poses significant financial and health burdens. Patients often face challenges such as delayed and inaccurate diagnoses, lack of access to medical specialists and limited treatment options. These hurdles lead to the progression of kidney disease to end-stage, requiring dialysis or transplant. 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.
As Kirsten looks ahead to the future, she hopes for new treatments, especially therapies, that could slow or stop her rare disease if it returns. Even more broadly, Kirsten dreams of a future where better education, early detection and medical advancements spare families from the devastating burdens her own has faced. Through Kirsten’s advocacy, she channels personal hardship into hope for the next generation of kidney transplant patients.
Learn more about the fight to pass this legislation here!