MRI of Valen’s huge cystic kidneys before removal.
PKD kidney on the left, normal kidney on the right.
Valen, her husband Noah, and her mom and dad celebrate PKD Awareness Day during an interview with Las Vegas TV.
What is ADPKD?
Autosomal dominant polycystic kidney disease, ADPKD, is the leading inherited cause of end-stage renal disease (ESRD) and the fourth-leading cause of ESRD overall. In ADPKD, fluid-filled cysts form on the kidneys, eventually leading to kidney failure, where dialysis or a transplant are the only options. More than 50 percent of people with ADPKD will develop kidney failure by age 50.
The average size of a kidney is a human fist and ADPKD kidneys can grow to the size of footballs and weigh up to 30 pounds each. ADPKD can be a devastating “family disease” that impacts the quality of life of many family members and their caregivers. Even though this disease affects the kidneys, it is a systemic disease because of how it affects other parts of the body. Side effects can range from high blood pressure, chronic pain, cyst bleeds, aneurysms, diverticulosis, liver cysts, infections in the liver due to bile duct plate malformations and more.
I was diagnosed with PKD at 10-years-old and endured excruciating pain, high blood pressure, cyst bleeds, removal of both of my kidneys, dialysis, a kidney transplant and a liver transplant due to bile duct plate malformation due to PKD. (To learn more details on my path with PKD, visit the “Meet Valen” tab.) Despite enduring all of this, I am living a very joyful and fulfilling life. I want you to know that there is so much HOPE for you and your family!
To learn more about how ADPKD is diagnosed, the stages, causes, symptoms and the current trials, visit: https://pkdcure.org/what-is-adpkd/
To learn more about JYNARQUE, the first FDA approved treatment proven to slow kidney function decline in adults, visit: https://www.jynarque.com/what-jynarque-does
Valen was invited by Otsuka Canada Pharmaceutical to speak at their event in Montreal celebrating the release of the first treatment for PKD in Canada.