Written by Jane Sullivan Horne
When I received a kidney from my brother David 10 years ago at Mayo Clinic in Florida, little did I know that someday my only son would have to undergo the same life-saving procedure after suffering from the same rare kidney disease that has plagued my family for several generations. Nor could I imagine that my brother’s son, Adam, would also give the same life-saving gift to my son, Trey, just 10 years later.
Several of my family members have suffered from a rare genetic kidney disorder called FSGS (Focal Segmental Glomerulosclerosis), which causes scarring of the kidney and the eventual loss of function. According to the National Institutes of Health, which is studying our family’s history with this disease, mine is one of only 20 families in U.S. with this genetic pattern afflicting several generations of relatives. My father died of end stage renal disease when I was only 11 months old. My father's mother, and two of his brothers, also died of the disease. And the only exposure we’d had to transplants was in 1970 when our mother gave our brother, James, one of her kidneys. I eventually was diagnosed with FSGS and now my 26-year-old son, Trey, has it. While there is no cure for FSGS, a kidney transplant can give the patient a high quality of life for many years. I am truly an example of that now, more than 10 years after my transplant surgery.