Published September 1, 2020 | On September 4th, we celebrate PKD Awareness Day. A day dedicated to educating and inspiring our friends, families, and communities to learn about PKD. When more people learn about PKD, more people get involved. And that means more resources dedicated to finding treatments and a cure. Not sure where to start when it comes to talking about the disease? Here are some things to keep in mind as you celebrate PKD Awareness Day.
I want to raise PKD awareness, what facts should I share?
To raise awareness of PKD, it’s important people know the basics of the disease. There are two types of polycystic kidney disease (PKD): autosomal dominant (ADPKD) and autosomal recessive (ARPKD). Let’s break down the difference.
ADPKD is one of the most common, life-threatening genetic diseases. In ADPKD, fluid-filled cysts develop and enlarge in both kidneys, eventually leading to kidney failure. It’s the fourth leading cause of kidney failure, and more than 50% of people with ADPKD will develop kidney failure by age 50. Once a person has kidney failure, dialysis or a transplant are the only options.
Unlike some genetic diseases, ADPKD doesn’t skip a generation, meaning it often affects many people in one family. Approximately 10% of the people diagnosed with ADPKD have no family history of the disease, with the disease developing as a spontaneous (new) mutation. Once a person has ADPKD, even through a spontaneous mutation, they have a 50% chance of passing it on to each of their children.
ARPKD is a rare genetic disorder affecting approximately 1 in 25,000 children. It affects both genders equally and can cause death in the first month of life. If a child with ARPKD survives the newborn period, the chances of survival are good. But for these children, approximately one-third will need dialysis or transplantation by the age of 10.
How can I celebrate PKD Awareness Day?
There are countless ways to show your support on PKD Awareness Day. Wear teal, the designated awareness color for PKD. Share facts on your social media like the ones here. Register for the Walk for PKD. Learn how to advocate for legislative changes that benefit our community—and even get alerts for advocacy opportunities! And, of course, donate to help us invest in research, awareness, and patient resources.
As a patient, is there more I can do to raise PKD awareness?
Just like the public, there’s more our researchers need to know about PKD. Another way you can further PKD research is by participating in the ADPKD Registry. Launched on PKD Awareness Day 2019, the Registry is the first nationwide database of patients with ADPKD. Collecting information in a standardized format tells us about the patient journey, unmet medical needs, and patient preferences while revealing more about the disease experience. Sharing your story will help researchers advance patient outcomes and improve your quality of life.
A powerful way to raise PKD awareness is by sharing your story on social media. Hearing stories from real people helps others connect to the cause. If you’re active in the Walk for PKD, share why you walk or who you walk for. People love to support causes others are passionate about.
No matter how you choose to celebrate on September 4th, your participation helps spread the word about PKD.
The PKD Foundation is the largest private funder of PKD research in the U.S. Since 1982, we’ve invested over $50 million in more than 1,300 research, clinical and scientific grants, fellowships, and scientific meetings. Each year, the Foundation identifies and supports the work of scientists and researchers from around the world who look for ways to treat and eventually cure PKD. Our vision is to #endPKD. However, donations are necessary to fund research that leads to more effective treatments and ultimately a cure for PKD.