Autosomal dominant polycystic kidney disease (ADPKD) is a type of polycystic kidney disease (PKD) where cysts grow inside the kidneys to various sizes at varying speeds. ADPKD can have a number of effects on one’s emotional, financial, physical, and social health and well-being. Otsuka Pharmaceutical has created a resource for all PKD patients, called Uncover PKD, which helps newly diagnosed patients prepare for these impacts.*

How does ADPKD affect the kidneys?

Over time, cyst growth overwhelms the kidneys, which has the following results:

• enlargement and increased total kidney volume;
• compression of and damage to surrounding tissue;
• abdominal, back, and side pain;
• obstructed urine flow;
• kidney stones;
• recurrent urinary tract infections;
• fibrosis (growth of fibrous tissue, or “scarring,” in response to injury); and
• kidney function decline.

Loss of kidney function can be slowed and delayed, but not reversed. Eventually, ADPKD leads to end-stage renal disease (ESRD). 

What are other side effects of ADPKD?

ADPKD frequently causes what are known as extra-renal manifestations. This means these complications are not directly related to the kidneys, but they do affect other bodily systems, organs, and glands.

These complications may include:

• increased hypertension;
• hepatic (liver) cysts;
• pancreatic cysts;
• intracranial (brain) aneurysms;
• vascular dissections (tears in blood vessel walls);
• abdominal wall hernias;
• male infertility; and
• depression.

Both renal and extra-renal symptoms can adversely affect quality of life, personal relationships, and financial stability. The greater the health burden, the greater the economic burden—often resulting in further stress and compounded illness.

What treatment is available, and what is the life expectancy?

ADPKD treatment focuses on managing the disease’s symptoms, particularly hypertension, which increases the risk of hastening ESRD and/or death. The most common causes of death in people with ADPKD are heart disease and infections.

Barring other illnesses and complications, it’s possible for people to live normal lives for many years with ADPKD—even with renal failure. It’s difficult to predict who will and who won’t, however, as renal decline in ADPKD patients is variable and dependent on numerous factors.

While the onset of ADPKD is most common in adults in their 30s to 50s, younger people have been known to develop kidney cysts and experience kidney failure. In general, the younger a person is when cysts appear, the faster renal decline is likely to progress.

*Otsuka Pharmaceutical Co., Ltd. (2018, Oct.). Consequences of ADPKD | Uncover PKD.