About the Study

The Polycystic Kidney Disease Treatment Network (PKD-TN) has developed the HALT PKD clinical trials to evaluate certain FDA approved drugs that may be effective in slowing kidney growth in persons who have polycystic kidney disease. Seven centers across the United States are participating in the two trials.

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Testimonial

Alan found out he had polycystic kidney disease around 5 years ago. He has generously agreed to share his story for us.

I had never heard of Polycystic Kidney Disease until about five years ago when an MRI revealed spots proliferating my kidneys and liver. I was 45 and the cause of my stomach trouble leading to these tests had nothing to do with the PKD they discovered. The big fear was cancer so when we reviewed an autopsy that had been performed on my father and found that he had PKD, it was actually a minor relief.

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Nutritional Corner by Kelly Welsh, R.D, C.D.

this months recipe is Roasted Corn and Edamame Salad, click here to read more.

Testimonial

Alan found out he had polycystic kidney disease around 5 years ago. He has generously agreed to share his story for us.

I had never heard of Polycystic Kidney Disease until about five years ago when an MRI revealed spots proliferating my kidneys and liver. I was 45 and the cause of my stomach trouble leading to these tests had nothing to do with the PKD they discovered. The big fear was cancer so when we reviewed an autopsy that had been performed on my father and found that he had PKD, it was actually a minor relief.

Learning about this genetic disease and realizing that my three children may have inherited this condition from me was unsettling. At 49, PKD has no affect on my health. I am an avid runner and enjoy a healthy and active life at this point. My blood pressure and my kidney function are well within normal limits. At this point and, God willing, for at least ten years I could be considered an exceptionally healthy person. However, because of a positive diagnosis of a "known condition" I have been confronted ethically with the requirement to reveal this on paper to a world that now labels me as a health risk - not because I now am but because I have a diagnosed disease. One result was the loss of my ability to operate an aircraft. I am an airplane pilot and upon revealing PKD I was stripped of my Medical Certificate by the FAA. For six months I was completely denied the ability to operate an aircraft and now indefinitely will only have privileges under a lesser provisional status with regular monitoring. Surely, greater wrongs have occurred but this affects my ability to earn a living. An experienced FAA Medical Examiner explained that even though my doctors have examined me and certify that nothing about this affects my ability to fly an aircraft, government agencies such as the FAA will reflexively deny privileges because it is a lesser known condition without a well defined medical protocol.

I have ADPKD. Odds are that about 1.3 in 1,000 that anyone may have this condition. Because of me, the odds for my children are 1 in 2. I am not sorry that I know but the experience has taught me to be mindful of how I deal with medical evaluation – for myself and my children. It is oddly ironic that I am now labeled as a health risk as a result of my interest to pursue and diagnose a condition for which I had no current symptoms. Frankly, it is possible that I would be better off not knowing. It would be better to know that I "may have it" but not be absolutely sure that you definitively have it. Now that I know, my hope is to contribute to the body of knowledge concerning this disease for benefit of others with PKD, myself and my children if they are later found to have it.

Alan is now working and remains optimistic about his health and future. His children have not been tested and show no signs of PKD presently. Alan was asked if he had always felt optimistic and he replied, "No, I was more fearful at first and I still have concerns. But, I have learned a lot from my doctor and nurse and also my local nephrologist. My approach to deal with fear is to turn the energy to constructive measures to deal with the threat. I hope my optimism is not a form of denial. Surely, I realize my condition could deteriorate rapidly once the cysts take up my kidney reserve. However, at this point I am a healthy person and I have a lot of responsibilities including three young children. God gives me strength to cope only with the moment at hand so I am trying to prepare for the future but not worry. My father passed away at 72 from an unrelated illness and had normal if not low blood pressure. He never knew he had PKD. What I have learned is that the disease has a different progression in each person so you really never know how it is going to play out."