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.

 

 

32 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
    • Grace Lindsey

      Were you able to get the info on what she was talking about.

      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
    • Naseeba

      I have early stage 4 pkd. I want to be helped please

      Reply
      • Judy

        please send info on treatment medication on PkD

        Reply
      • Sumi Tamang

        I have pkd with hypertension..I was suggested medication for hypertension (telmisartan) but I am trying to control it through diet and exercise..is it a safe option or should I start antihypertensive right away? And I also in the article you have mentioned there is treatment for pkd but not what it is exactly..

        Reply
        • Chhabilal Sharma

          Hi sumi g my advice please take medicine and how old are you
          You have symptoms

          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
        • Tammy

          I understand cordycps inhibit the growth of cysts, and also curcumin. Curcumin helps to repair oxidative stress and prevents the growth of cysts

          Reply
      • Sumi Tamang

        I have pkd with hypertension..I was suggested medication for hypertension (telmisartan) but I am trying to control it through diet and exercise..is it a safe option or should I start antihypertensive right away? And I also in the article you have mentioned there is treatment for pkd but not what it is exactly..

        Reply
    • Kara Ayers

      I have spoken over and prayed for your daughter, for complete restoration and healing, in the name of Jesus!

      Reply
    • Naseeba

      Hi. Please tell me how I can drop my creatinine and Urea levels, I need to up my eGFR by about 10 minimum. Please help me.

      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
    • Michael Nwiwiri

      I had PKD I need your support

      Reply
      • JUDITH

        I was diagnosed with adpkd four years ago I am 51 and live in Kenya how can I get this medicine, I need help.

        Reply
    • Shailja

      Yoga and intermitten fasting

      Reply
      • njayadev

        @Shailja Did yoga and intermittent fasting working for you? Im trying it now, but not sure if it works for my PKD.

        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
      • Sneha

        What’s the medicine or solution to control pkd?

        Reply
  7. Renato villacencio

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

    Reply
  8. Owoahene patricia

    I just test and it was positive with Pkd both side I need your help am in Ghana

    Reply
  9. Patti Miller

    I want to know what herb can help with this

    Reply
    • Jane Agcoili

      Pls help us,,my brother has pkd,,and my family dont know what to do,,my brother is so young,,and we absolutely dont what to do.pls help us,

      Reply
      • OPARA GIFT

        Am GIFT, 35 years diagnosed with APKD in both kidney, don’t know what to do please help me

        Reply
  10. Virendra

    Hi, My wife has diagnose with PKD last year please help she is 25 year old

    Reply
  11. Younus Qureshi

    Dear sir I am suffering from genetic polycystic kidney disease. age 55 and bith kidneys enlarged in for months as 19 & 18 Centemeters. abnormal enlargement worried me. I ran in early morning 7Km in 45 minutes. weight is 73. height is 5.6 inch. no pain but fear. blood pressure normal. creatinine 1.5 or less. I avoide meat and protenes as precautionary measures. what medicines I can used to stop enlargement are slower the enlargement. what to eat and what to avoide. is there any surgery available?

    Reply
  12. Mike

    To all, my wife has PKD and is about to receive a kidney as a result of her cousin and the paired donation program. Mayo Clinic will remove both PKD kidneys and do a transplant at the same time. Please consider this institution. They are the only place doing this.

    Reply

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