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When prioritizing topics of conversation for a doctor’s visit, kidney size may not be at the top of most people’s lists. However, for those with a family history of kidney disease, such as autosomal dominant polycystic kidney disease (ADPKD), actively monitoring the size of this vital organ is among the most important things to address.

“Patients have expressed feeling confused, scared, angry, and unsure of how to proceed following an ADPKD diagnosis,” said Louis Allesandrine, vice president commercial franchise head of nephrology, Otsuka America Pharmaceutical, Inc. “In honor of National Kidney Month, Otsuka encourages those with a family history of ADPKD to work closely with their physician to assess kidney size, understand their risk factors, and determine the appropriate path forward.”

ADPKD is a rare disease that causes multiple cysts to form on the kidneys and affects an estimated 140,000 Americans. Enlarged kidneys are often a sign of the condition; however, someone may live with ADPKD for years without noticeable symptoms, while the disease progresses. This can result in irreversible damage, which is why regular kidney size assessment is critical for those who have been diagnosed with ADPKD.

Early detection is a key factor to slowing disease progression

A normal kidney weighs about a third of a pound. In ADPKD, because of cysts, affected kidneys can weigh up to four times more and grow the size of a football. As cysts grow, kidneys continue to enlarge causing additional damage. In fact, people with larger kidneys are more likely to experience more rapid loss of kidney function than people with smaller kidneys. Loss of kidney function may lead to end stage kidney disease (ESKD), eventually requiring dialysis or a transplant.

A common way to monitor kidney function is by measuring estimated glomerular filtration rate (eGFR).  However, this alone may not sufficiently predict disease progression because eGFR does not reflect kidney size.  Since eGFR measures how well kidneys are filtering blood in that moment, the kidneys may appear to function normally even though cysts may be growing larger, impacting overall kidney size.

Imaging tests such as ultrasound, magnetic resonance imaging (MRI), or a computed tomography (CT) scan may show the number of cysts on a kidney and if the kidneys are larger than they should be. These tests provide a more detailed picture of total kidney volume (TKV) to determine if a patient is at risk for faster disease progression. A nephrologist can compare TKV with a patient’s height and other factors to assess risk. Although ADPKD is a rare disease, it is also the most common inherited kidney disease. Informed conversations are a crucial step in understanding family history, identifying potential risk factors related to ADPKD, and if necessary, determining the best course of managing the disease.

Patients and those interested in starting an informed conversation about ADPKD can visit