Kidneys, which are tasked with removing toxins from the bloodstream and transforming waste to urine, are one of the most important organs in the human body. According to Polycystic Kidney Disease Foundation, autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases — and most people have never heard of it. Even more, a recent study published in Kidney360, found that Black people have the highest rate of ADPKD (73 per 100,000 compared to 63.2 for whites, and 39.9 for Hispanics). The condition, which is marked by cysts on the kidneys, leads to a decrease in kidney function and ultimately, kidney failure.

Here’s what you should know about ADPKD.

  1. What causes ADPKD?

The disease is caused by mutations in either the PKD1 or PKD2 gene. The condition is typically inherited and can be passed down from either male or female parents. The is a 50 percent chance that a parent will pass the disease down to his or her child. Additionally, having the mutated gene from one parent is sufficient to cause the disease. Though it is less common, ADPKD can also be caused by a spontaneous mutation. Researchers discovered that approximately four to 10 percent of patients with ADPKD had no familial history of the condition.

2. How does ADPKD impact your kidneys?

ADPKD creates cysts in a kidney that can enlarge and become filled with clear fluid or blood. These growths can push kidneys, which are normally the size of a human fist, to become as large at a football and weigh up to 30 pounds. Overtime, the growths impede kidney functioning and become painful.

3. What are the symptoms?

Unfortunately, there are no glaring warning signs that you should test for ADPKD. Therefore, knowing your family’s health history and regular doctor visits are very important. People who have ADPKD often experience high blood pressure, blood in urine, feel heaviness in the abdomen or back, have urinary tract infections or kidney stones.

4. How is ADPKD diagnosed?

There are several ways to test for autosomal dominant polycystic kidney disease. DNA testing is one way to determine if you have the condition or carry the genes. You may also ask your doctor for an ultrasound, CT scan or MRI scan.

5. How do I know if I’m at risk?

Advocate for testing if you have you a history of kidney disease in your family. You should also request testing if you have or are experiencing any of the general symptoms — high blood pressure, blood in urine, urinary tract infections, kidney stones, and back/abdomen discomfort — that are affiliated with ADPKD. Early diagnosis can lead to better treatment options, family awareness and support.

The Polycystic Kidney Disease (PKD) Foundation is dedicated to funding research, supporting advocacy, and building a community for all impacted by PKD.  Find out more about the PKD Foundation and ADPKD.