Understanding Protein Leaks, Kidney Disease & APOL1 Risk
What is Protein in the Urine?
Protein in the urine, also known as proteinuria, is often one of the earliest signs that something may be wrong with the kidneys. Healthy kidneys normally filter waste while keeping important substances like protein in the blood. When the kidneys are damaged, they may allow protein to leak into the urine, which can be detected through a urine test.
Nephrotic syndrome is a kidney condition where large amounts of protein are lost in the urine. It can cause swelling (especially in the legs and around the eyes), high cholesterol, and a higher risk of blood clots. Nephrotic syndrome is often linked to underlying kidney diseases such as Focal Segmental Glomerulosclerosis (FSGS), particularly in people of African descent.
What is APOL1 and Why Does it Matter?
APOL1 is a gene that provides instructions for making a protein that helps fight infection. However, certain variants of this gene — found more commonly in people of African and Afro-Caribbean ancestry — have been linked to a higher risk of kidney disease, especially FSGS and other protein-leaking kidney conditions.
Having two copies of the high-risk APOL1 gene variant significantly increases the chance of developing kidney disease. Although not everyone with these variants will get kidney disease, the risk is elevated, particularly when other factors such as high blood pressure or diabetes are present.
Why This Matters for Our Community
African and Afro-Caribbean individuals are more likely to carry APOL1 gene variants and are disproportionately affected by kidney disease. Awareness, early testing, and lifestyle changes can make a difference. If you or a family member has a history of kidney disease, especially with proteinuria or swelling, talk to your doctor about further testing, including the possibility of APOL1 genetic testing.
What You Can Do?
Ask your GP for a urine test to check for protein.
Monitor your blood pressure and manage diabetes if present.
Speak to a kidney specialist if you have a family history of kidney disease.
Maintain a kidney-friendly diet low in salt and processed foods.
Stay informed about APOL1 and genetic risks within your community.
Support Our Work
At AACKA (African & Afro-Caribbean Kidney Awareness), we’re committed to improving kidney health and wellbeing within our community. Every blog post, awareness walk, and workshop is created to share knowledge, spark conversations, and save lives — especially among Afro-Caribbean families who face a higher risk of kidney disease.