If you or a loved one is at risk for kidney disease, it’s important to understand a lesser-known but significant condition called APOL1-mediated kidney disease (AMKD). This form of kidney disease is linked to specific changes in a gene called APOL1 and affects people with certain ancestral backgrounds more than others. Though AMKD may not cause symptoms in its early stages, knowing your risk and learning how to manage the disease can help protect your kidney health. Here’s a breakdown of AMKD’s causes and complications, and what you can do to stay on top of your health.*

Genetics and Risk: Why AMKD Matters

You inherit the APOL1 gene from both parents, and certain variants—called G1 and G2—are linked to a higher risk for kidney disease. These variants originally developed as a defense against parasitic infections in West and Central Africa. 

Unfortunately, having two copies of these risk variants significantly increases the likelihood of developing kidney disease, particularly focal segmental glomerulosclerosis (FSGS) and HIV-associated nephropathy (HIVAN).

This risk is most relevant for people of:

• African American, 
• Afro-Caribbean, or 
• Certain Hispanic/Latino backgrounds. 

Still, not everyone with the variants will develop kidney disease; about 80% of people with two risk copies never do. Your environment, lifestyle, and other health factors play a role in whether the disease develops and progresses.

Symptoms, Diagnosis, and Genetic Testing

AMKD can be tricky to detect early because many people don’t show symptoms until the disease has progressed. If symptoms do appear, they might include:

• Foamy urine and more frequent urination
• Swelling in the legs or around the eyes, 
• Extreme tiredness, 
• Dizziness, nausea, and/or 
• Dry, itchy skin. 

Some signs—like high blood pressure or low levels of protein in your blood—may point to underlying kidney problems.

Getting tested is the only way to know for sure if you carry APOL1 risk variants. A blood or saliva sample can determine your genetic risk. This test is often ordered by a doctor or a genetic counselor, who can explain the results and what they mean for you and your family. Here are two resources: NIH Genetic Testing Registry and NSGC Genetic Counselor Finder.

In addition to genetic testing, doctors may use urine and blood tests—like eGFR and uACR—to evaluate kidney function and damage over time.

Treatment, Lifestyle, and Taking Control

Currently, no treatment specifically targets AMKD. That said, the same strategies used to manage chronic kidney disease can help slow its progression. Your care plan may include medications such as:

• ACE inhibitors and ARBs
• Diuretics, and  
• Cholesterol-lowering drugs. 

Some patients may also qualify for clinical trials that explore new therapies tailored to AMKD.

Lifestyle changes also play a big role. Following a kidney-friendly diet, limiting salt and protein intake, staying physically active, and attending regular medical appointments are all key. A dietitian can help personalize your nutrition plan, and even simple activities like walking or gardening can contribute to better health. 

Keep an open dialogue with your healthcare team and ask questions that help you understand your personal risk and management options.

*National Kidney Foundation. (2024, February 8). APOL1-Mediated Kidney Disease (AMKD). https://www.kidney.org/kidney-topics/apol1-mediated-kidney-disease-amkd 

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