PKD Connection Blog

Research

How motherhood inspired PKD patient to get involved with tolvaptan clinical trials

Jullie (right) with her husband and their daughter.

This Mother’s Day, we’re celebrating moms and major milestones. We reached out to Jullie Hoggan, who took part in the clinical trials that led to the approval of tolvaptan (JYNARQUE™), to learn more about what having this treatment means to her and her family:

The day I became a mom, I knew I had to do more. I was diagnosed with PKD four years before my daughter was born. I had no family history. My parents were tested and neither had it, so my PKD had come from a spontaneous genetic mutation. My husband and I knew I may have passed it on to our daughter, so the urgency to help find a treatment became very real and personal.

I became aware of the tolvaptan clinical trial through the PKD Foundation. Participating meant an eight-hour round-trip drive for every appointment, but the idea that there was finally something concrete that I could do was too exciting to pass up! I started the drug trial in 2007. After three years, that part of the study ended, and in order to continue, we would be spending many eleven-hour days driving to and from the new location at UCLA.

Jullie with her family at the 2018 Las Vegas Walk for PKD.

It has been 11 years since I started taking the drug. My kidney function was stable for years, but as expected, has slowly declined. I now have a GFR around 30. If I apply the average results of the studies to my progression, I would currently be around a GFR of 15 had I not been on the drug.

Because of this drug, I will be able to see my daughter start college before I need a transplant. Had I not been on tolvaptan, I would likely already be on dialysis or on the transplant list. Everyone involved in making this study happen has allowed me to raise my daughter as a healthy person rather than a mom on dialysis or a mom waiting for a transplant. What an amazing gift!

Jullie with her daughter.

Think of all of those who went before us. How amazed they would be to see a day where we can do more than wait? With the recent FDA approval of tolvaptan, we finally have a treatment that has been proven to slow the progression of ADPKD. I’m so thankful for the PKD Foundation, the doctors and researchers, Otsuka Pharmaceuticals, and for all of the participants who were willing to take the risk and be part of the trial.

I know many question whether they should try the drug. I realize it’s not for everyone, but our children and future generations will have this treatment available to them if they choose. If we continue to participate in and fund research, one day we will have a cure. I know for me personally, it is so comforting to know that if my daughter is diagnosed with PKD, she now has a treatment option.

We all play a part in this process, and we all need to find a way to participate and be the voice of PKD in our communities. As a mom, I would do anything for my daughter, and I’m grateful that becoming a mom pushed me to get involved and take an active role in finding our first treatment for PKD.

Share how you’re celebrating this Mother’s Day in the comments below!

Tolvaptan (JYNARQUE™) is hopefully the first treatment of many. To help discover new possible treatments for PKD, get involved with clinical trials. Check out our website to see if you or someone you know is eligible for a current study!

Jullie Hoggan
I am 46 years old and live in Henderson, NV, with my amazingly supportive husband and daughter. I work part time at a hospital as a speech language pathologist and in my free time I like to make pottery and travel with my family. I was the Las Vegas Walk for PKD Coordinator for four years and continue be amazed by our family and friends who are willing to donate and support our yearly Walk event. I love being able to help those who are newly diagnosed navigate the medical system and come to terms with their diagnosis.

Comments

  1. Nicole says:

    How wonderful! I feel the same way about my 3 kids and 8 grandkids. I want to do everything i can to find a cure including fundraising for the PKD foundation and I am set to begin a Metformin clinical trial in June. Anything for the kids! 🙂

  2. Luis says:

    Thank you very much for your comment and for you effort, for great people like you we have hope. I hope that in the near future our kids never suffer this condition, by the time we can fight with PKD and wait for this medicine recently approved.

    Thank you and have a very nice mom´s day, for you and for every PKD´s mom too!!

    Regards from Perú,
    Luis

  3. Lynn Camino says:

    I too joined the Reprise study and then Tempo for my daughter’s sake. She was diagnosed during my pregnancy during an ultrasound. In the Reprise study I received the placebo which was disappointing since my GFR was 30 but I knew that if I helped with the research of Tolvaptan it might give my daughter the opportunity to take Tolvaptan and benefit from years of therapy. My prayer is that if she starts taking Tolvaptan soon enough then she may never need dialysis or a transplant, and if she does she will not be like me at age 51 and have to meet a transplant team.

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