Have you ever heard of PKD? Polycystic Kidney Disease is a genetic disease that is more common than all of the known genetic diseases combined: Down’s syndrome, cystic fibrosis, muscular dystrophy, sickle cell anemia, hemophilia and Huntington’s disease. Yet few have heard of it.
Author Suzanne Ruff is on a mission to put PKD in the spotlight and encourage researchers to find a cure. Her award-winning memoir, The Reluctant Donor, tells the story of her family, 19 of whom have died or have survived with kidney transplants.
The Facts about PKD
There is no cure for PKD. When large fluid-filled cysts result in kidney failure, it is a death sentence. There is no cure and the only treatment is dialysis or a transplant. So how prevalent is it?
- 650,000 Americans have PKD.
- 12.5 million people world-wide have it.
- If one of your parents has PKD, you have a 50% chance of inheriting the disease.
- It affects men, women, children of all ages, races and ethnic origins.
- It does not skip a generation.
- Of the more than 116,000 waiting for an organ transplant, over 90,000 are waiting for a kidney.
Suzanne’s Journey to Become an Advocate for Organ Donations
Named for her grandmother who died of PKD before she was born, Suzanne felt it was her purpose in life to donate her kidney and to use her talent as a gifted story-teller to broadcast the need for organ donations and a cure for this devastating disease.
The wonderful courageous story The Reluctant Donor is amazingly full of humor. Suzanne says it’s really about life and family and all of the ups and downs that we face. She also says that the best compliment she receives is when someone tells her that they laugh and cry and laugh again, because that is how we live with family. Yes, Suzanne was reluctant, first of all to find out if she had PKD. Then when her sister needed a kidney, she wasn’t even speaking to her. Before she could share her life-sustaining kidney, she had to overcome the rift in the relationship.
Check out Suzanne’s website and the websites of The PKD Foundation, The National Kidney Foundation and The United Network for Organ Sharing (UNOS) for more about PKD, and the facts (please don’t believe the myths) about organ donation.