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 tolvaptan 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.

 

 

11 Comments

  1. Carolyn

    I’m a woman of 84 and also have pkd my stomach appears as a 6 month pregnant woman have I waited yo long and yes I’m on dialysis

    Reply
  2. BRIAN STEPONIK SR

    Send me more knowledge about this please, I have multiple cysts in both kidney’s in left one is 10 cm the right one is 12 cm ,what can I do ,my nephrologist dr seems like he doesn’t really care!

    Reply
  3. Stanslous Bukachi

    My daughter 11 has PKD and we have not received any medication yet apart from painkillers. When 8 she went for 3 dialysis and was stopped because apparently it became risky for her. She has stunted growth and has urine retention almost weekly. She is always in pain. Any assistance or guidance. We stay in Kenya.

    Reply
    • M Niaz Hussain

      I am adpkd patient please help me.

      Reply
      • Lisa

        Pls assist, I have PKD am 50 years old and now found out my son has it too and he is 24 years old.

        Reply
  4. Tersia

    Hi. I am 49 years old and am awaiting dialysis for over a year. I live in South Africa. Is there anyone that knows if those medications are available here. My GFR count is 4. And my creatine levels are over 1000 now. Please help if you have any advice

    Reply
  5. margie muaña chua

    hi im margie chua i have pkd stage 5 end stage i have cyst both kidneys i am 41 now and on going dialysis treatment ,pls help

    Reply
  6. Margarita

    My dad has PKD, please help?

    Reply
    • PKD Foundation

      Hi Margarita, you can connect with our support team through the PKD Hope Line by dialing 844-PKD-HOPE (844-753-4673). We are available Monday through Friday from 8 a.m. – 5 p.m. CST to answer your questions and direct you to resources that will address your concerns.

      Reply
  7. Renato villacencio

    Hi Im renato villacencio, i have ADPKD please help me. What is the treatment?

    Reply

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