ADPKD stands for autosomal dominant polycystic kidney disease.
ADPKD is the most common type of polycystic kidney disease (or PKD).
PKD describes a group of hereditary diseases that cause cysts to grow and form in the kidneys.
Over time they expand, making the kidneys grow larger.
This makes it hard for the kidneys to function normally and can lead to kidney failure.
About 1 in 2,000 people in the United States have been diagnosed with ADPKD.
ADPKD is found equally in men and women and among all ethnic groups.
ADPKD is hereditary, meaning that it runs in families and is the result of mutations (or changes) in specific genes called PKD1 and PKD2.
“Autosomal dominant” refers to how the disease is passed down from parent to child.
If one parent has the disease, their children have a 50% chance of inheriting it.
1 in 20 people with ADPKD develop the disease with no clear family history.
Most people with ADPKD don’t notice any symptoms until they are between 30 and 50 years old. But even if a person with ADPKD doesn’t feel like anything is wrong, the disease may still be progressing.
Let’s take a closer look at the disease itself and find out what ADPKD does to your body.
ADPKD can cause problems for many parts of the body, including the liver, the pancreas, the spleen, the large intestine, the brain, and the walls of the abdomen, as well as the heart and blood vessels.
What are the signs and symptoms of ADPKD?
When signs and symptoms do begin to appear, people with ADPKD may notice things such as back or side pain, an enlarged abdomen, or blood in their urine. They may also develop high blood pressure and experience frequent urinary tract infections.
Thinking ahead about disease progression can lead to feelings of anxiety and worry. ADPKD may even impact some people's decisions about whether or not to start a family.
ADPKD is the fourth leading cause of end-stage renal disease (or ESRD), including kidney failure.
In ESRD, the kidneys stop working, and can't continue to filter the blood and clean it properly. The filtration rate (sometimes called GFR or eGFR) goes down and the amount of waste products in the blood - like creatinine - goes up.
Approximately 1 in 2 people with ADPKD develop kidney failure by the age of 60 and will need dialysis or a kidney transplant.
Dialysis can lead to poor quality of life and kidney transplants can result in complications.
If you have a history of ADPKD in your family, it’s important that you get screened.
Understanding the symptoms that can come with ADPKD is important.
If you think you may be experiencing symptoms of ADPKD, but have not been screened, diagnosis may help manage future complications.
You may even want to talk to a special kidney doctor known as a nephrologist.
Although there is no cure, it’s important to understand the signs and symptoms of ADPKD.
Talk to your doctor about disease progression and how you can manage ADPKD together.
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