Polycystic Kidney Disease (PKD) is a serious genetic condition that affects millions of people worldwide, and yet many people have never heard of this disease. June 17th through June 23rd marked PKD Awareness Week. Although this week has passed, many events are still going on nationwide to help raise awareness about PKD.
What is Polycystic Kidney Disease?
Polycystic Kidney Disease (PKD) is a genetic disorder that causes affected individuals to have clusters of cysts (fluid-filled sacs) in the kidneys. These cysts can also develop in other parts of the body, particularly the liver. The accumulation of these cysts interferes with the kidneys’ ability to function and affected individuals can eventually develop kidney failure.
How can someone develop PKD?
PKD can be inherited in either a dominant or a recessive way. Dominant inheritance indicates that one genetic mutation is enough to cause symptoms of the disease; recessive inheritance indicates that two genetic mutations are necessary in order to develop the disease. Autosomal dominant PKD (ADPKD) is the more common form of the disease. Most ADPKD is inherited from a parent; about 10% of affected individuals are the first person in their family with ADPKD. Autosomal recessive PKD (ARPKD) is the rarer and more severe form of the disease. When both partners in a couple are carriers for ARPKD, the couple has a 1 in 4 chance of having a child with ARPKD. CooperGenomics tests individuals to determine if they are carriers for ARPKD.
What treatments are available?
Unfortunately, there is no cure for PKD, and treatment focuses around management of the symptoms of the disease. Treatment plans include low-sodium, low-fat diets for patients experiencing high blood pressure, pain medication or cyst removal for patients experiencing chronic pain, and dialysis or kidney transplant for patients experiencing kidney failure.
Where can PKD patients find support?
Check out PKDCure, which offers support groups; has information about current research for curing PKD, political advocacy, and treatments and trials available for PKD patients; and hosts marathons, concerts, picnics, and fundraisers for raising awareness about and finding a cure for the disease.
Share your story at PDK Will Not Beat Me. Created by a PKD patient, Valen Keefer, the website provides a virtual support network for PKD patients–“to share stories, to ask questions and to make life-long friendships.”
What PKD events are in my area?
Each year, PKDCure hosts 2 national events around the United States: Walk for PKD and Run for PKD–each hosted by local chapters of the organization. Find more information about these and other events from your local chapter!