PKD Connection Blog

Advocacy, ADPKD

A treatment for ADPKD: long awaited, finally arrived

We reached out to Honorable Karen Thurman, a former member of the U. S. House of Representatives, to hear her journey on dealing with PKD in her family. Karen also shares her thoughts on the news of the first ADPKD treatment and how JYNARQUE™ will impact the PKD community.

Oh my gosh, when my husband John and I were in our early forties, John was diagnosed with polycystic kidney disease (PKD). Many of you know that PKD is a genetic disease causing uncontrolled growth of cysts in the kidney, often leading to kidney failure. We had never heard of this disease. It was explained to us that PKD is passed down by a parent and, if you are diagnosed, there is a 50% chance you can pass it on to your children.

So we asked the doctor if there was a cure, but the answer was no. We then asked what the treatment options were, but there were none. We were told there were only two options: dialysis and/or transplant. So, in 1992, John started dialysis. In 1995, he received a transplant.  Oh, what a difference. However, there still was no treatment or cure.

When I was elected to Congress in 1992, there was little research except what the PKD Foundation was doing on its own. As someone interested in health care and the federal deficits, it became clear to me that the cost to provide dialysis and/or a transplant were very expensive. Where was the research to give us alternatives? How could we free ourselves from this terrible disease? There was some progress, but still no treatment or cure.

As predicted, one of our children was diagnosed with PKD, and still, there was no cure or treatment. Things were changing, but still nothing—until now. It is so exciting to know that we actually have a treatment that may prolong the function of polycystic kidneys. For someone with the disease, this means you can live a fairly normal and productive life.

This is wonderful news and gives hope to many. I want to thank Otsuka Pharmaceuticals for their determination and continued desire to help PKD patients.

Questions about JYNARQUE™ (tolvaptan)? Be sure to follow our FAQs page for the latest news & updates: pkdcure.org/jynarque.

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