“When I was three, I was hit with a 104.7 fever in the middle of the night. I was soon rushed into my doctor. They couldn’t figure out where the fever was coming from and took a chance on checking to see if it was the result of a UTI. I was told my urine looked like Coca-Cola! Immediately, blood work was ordered. Every day for a month, we did urine tests locally. When nothing was found, I was sent to UNC Children’s’ Hospital and was told it was most likely a kidney disease called IgA nephropathy. I returned for checkups once a month, then every 3 months after that. After about a year, I was told my kidneys were being damaged and I needed an immediate kidney biopsy to positively identify what I had.
After the biopsy, my family and I were informed that I had a rare, hereditary kidney disease called Alport Syndrome. The disease was so rare at the time, there was not much information about long term outcomes and prognosis. My parents were told that by the time I was 12 years old, I would most likely be in complete renal failure and in need of a kidney transplant. Hearing loss and eye defects were also expected. I had now become a patient suffering with a chronic kidney disease, so what did this mean for me?
This meant biyearly checkups at UNC Children’s Nephrology, watching my diet from an early age, needing more sleep than others my age needed, and taking medicine each day. My reaction to being a kidney patient was a result of how my parents treated me. They told me that I had special kidneys, and that we needed to take special care of them. Aside from that, they have always treated me as if I was a normal kid growing up and had no limits!
For my parents it was different. It meant a life of constant worry and vigilance – worry every time I got sick or got a fever, that my kidneys would be damaged because of the increased amounts of protein and blood that resulted from fevers, sickness, dehydration, stress, and exhaustion.
Symptoms of Alport Syndrome include protein and blood in urine. I have not at this point progressed in the disease as predicted, and I have recently been told that there is a possibility of me being a carrier of the disease, which means that it could be passed to my children. Some things I do to combat the disease include taking blood pressure medication that decreases the pressure in the kidneys to prolong the effects of the disease, eat healthy, exercise, and stay hydrated. I also take precautions about the flu and other illnesses.
K.A.R.E. (kidney awareness and renal education), is a non-profit organization that I created. This is my way of spreading awareness of kidney disease as well as creating a community of support for the patients and families struggling with kidney disease. Through K.A.R.E, I can educate the public on kidney disease, provide healthy diet alternatives, and raise money to support patients and fund research. So far, I have raised over $500 that was donated to the Willie Stargell Foundation and volunteered at the Willie Stargell Foundation 5K run. I have also collected blankets and earbuds from the Wilmington community that were donated to a local dialysis center for the patients. Please check out K.A.R.E. on Facebook @KARE, or on Instagram at @kare_initiative.”
– Cara Insco
Thank you to Cara for sharing her story. To learn more about Alport Syndrome, please visit our Kidney Health Library.