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1 Kevin Fowler is president of The Voice of the Patient. Marian Charlton, RN, is chief transplant coordinator at Weill Cornell Kidney and Pancreas, The New York–Presbyterian Hospital/Weill Cornell Medicine Center. Mendy Reiner is founder and chairman of Renewal in Brooklyn.
Fowler: In December 2000, I began to notice lower back pain. Initially, I attributed the pain to carrying large amounts of wood to our fireplace, but in the back of my mind, I knew the source of my pain could be something else. My deceased mother had polycystic kidney disease (PKD). I saw her suffer from constant back pain due to the enlarged size of her kidneys caused after PKD. Up until this time, I never had the courage to determine if I too had PKD. I was too scared after seeing