If you or someone you know has ADPKD, email us at Contribute@patientworthy.com. We’d love to hear from you about your experience!
What is PKD and ADPKD?
PKD (polycystic kidney disease) is a hereditary disease that affects about 1 in 500 persons and typically causes kidney failure in midlife. The most common form is ADPKD (autosomal dominant). If either parent has ADPKD, there is a 50% chance of inheriting it. Read more about ADPKD here.
In my family, nearly half of my paternal relatives have PKD. My grandmother, father, two aunts, four uncles, and one cousin died because of PKD. Two of my aunts died in their 40’s before dialysis was common, leaving behind families with young children. Then when home dialysis was available, I remember two of my uncles receiving home hemodialysis, provided by my aunts. This was a very stressful situation for my aunts.
I currently suffer the effects of PKD along with my sister, brother, two nieces, one nephew, and several cousins. My siblings and I have been blessed to receive transplants from other siblings who did not inherit the disease. But we still deal with high blood pressure, abdominal distension, pain, urinary tract infections and other side effects of the drugs we take to prevent rejection.
What can people do to help?
The PKD Foundation is the only organization in the world dedicated to finding a cure for PKD. I belong to the Central Ohio Chapter – a group of volunteers working to raise funds and awareness of PKD by coordinating the Walk for PKD. Across the nation many cities will be having walks to raise awareness and research funds for PKD. Check out pkdcure.org for more information. The website also has a great PKD Connect page to find mentors, education, and a PKD blog page.
I work to help find a cure for PKD so future generations will not have to be burdened by this disease.