(Kansas City) March 1, 2006—Karyn Waxman calls herself a “human guinea pig.” Taking part in medical research of polycystic kidney disease (PKD) may not save this 50 year-old’s life. But, she hopes it will help future generations, including her two daughters, avoid the symptoms of PKD.

PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia — combined. For some 600 thousand Americans with PKD, fluid-filled cysts grow on the kidneys. Over time, these cysts get bigger and multiply. Most PKD patients will suffer kidney failure. Their options are dialysis or a transplant. There is no treatment or cure for PKD.

PKD is widespread, but relatively unknown. Scientists first identified a gene associated with PKD in 1985. They found another in 1993. In the last decade, that laboratory research has moved to the patients’ bedside..

Karyn and her daughters were part of the CRISP study. Now, Karyn is one of just 42 Americans taking part in clinical trials for the investigational drug- Tolvaptan. Researchers hope it may help PKD patients by stopping or reversing the growth of cysts. Karyn wants to be among the expanded group of patients in the Phase III trials, which could begin soon.

So far, Karyn is lucky. While she is suffering from some of the PKD symptoms such as high blood pressure, pain and cysts, her kidneys are still functioning. Right now she does not need a transplant. Her daughters’ kidneys look normal on ultrasounds. They are waiting for the results of genetic testing, which will determine if the PKD gene was also passed onto them.

Karyn decided she needed to connect with other PKD patients, so she founded the Mid-South chapter of the PKD Foundation 6 years ago. She’s served as chapter coordinator ever since, and was recently asked to serve as a member of the PKD Foundation Board of Trustees. The not-for-profit PKD Foundation is the only organization, worldwide, dedicated to finding a treatment and a cure for this devastating disease. For more information about PKD and the PKD Foundation, visit www.pkdcure.org or call 1-800-PKD-CURE.

March is National Kidney Month.

To schedule an interview with Karyn Waxman or other PKD patients and experts in your area, contact PKD Foundation Media Manager Jennifer Robinson at (816) 268-8493 or jenniferr@pkdcure.org.