Suzanne’s mother, pictured
In 1991 my mother was rushed to the hospital. In the days that followed I learned that she had kidney failure and she began the last seven years of her life on dialysis. No one knew why she had kidney failure. No one knew why she hadn’t been diagnosed before becoming critically ill. No one knew of anyone else with kidney disease on her side of the family.
In 1999, at age 60, my primary care physician told me it was time to see a nephrologist. She had been my doctor for many years and had been following my kidney labs while I continued my life, seldom thinking of it. After some research I decided I should see a nephrologist at a Boston teaching hospital, Brigham and Women’s. My doctor specialized in genetic kidney diseases. He decided to do a genetic test. So began my family’s introduction to ADTKD/UMOD.
I spent many hours researching the internet trying to read all I could on this rare kidney disease. Eventually, I found Dr Bleyer’s information on the Wake Forest website and emailed him. He called me and I was included in the study.
Eight years ago I had a living donor transplant at New York Presbyterian. Since then, three close relatives have been diagnosed with UMOD but there are almost certainly more. Through Dr Bleyer and his team’s work I have hope for my family. Attending the family meetings, learning about others who have had many years and many family members living with ADTKD, meeting the people who research and communicate on this disease, seeing the formation of RKDF—all have been ongoing lessons in a world I didn’t know existed. I am grateful beyond measure to those who have led us to where we are now and make it possible to hope that the newly diagnosed will have more options.