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Apolipoprotein L1 (APOL1)

Apolipoprotein L1 (APOL1) kidney disease is a collection of kidney diseases associated with the presence of specific forms of the APOL1 gene in a person’s DNA. These specific APOL1 gene variants are believed to have arisen in people in Western Africa. The gene changes developed in the past 10,000 years to protect against certain parasitic diseases. Descendants of people with these original APOL1 gene variants may now be living anywhere in the world. Most people with APOL1 kidney disease are of African ancestry.

Medically reviewed by Dr. Martin Pollak, M.D.

Who Gets APOL1

APOL1 kidney disease is most common in people with recent West African ancestry. This is typically people who identify as African American, Afro-Caribbean, Black or Latino.

Your risk for APOL1 can only be determined by DNA testing. You are more likely to have what is called a “high-risk APOL1 genotype” if you are of recent African ancestry.

Signs and Symptoms

The signs and symptoms of APOL1 kidney disease are not different from other forms of kidney disease. Certain high-risk versions of the APOL1 gene contribute to a variety of kidney disease presentations, such as:

  • Acute onset of edema (swelling) and proteinuria (elevated protein in urine)
  • Slowly progressive kidney disease with no early symptoms

Diagnosing APOL1

Anyone with West African ancestry and kidney disease may have APOL1 kidney disease. Most people diagnosed with APOL1 have some abnormal proteinuria. However, many people do not know all details of their ancestry.

DNA analysis of blood or saliva samples is the only way to diagnose APOL1. Your DNA is studied for the presence of specific APOL1 genotypes. Early diagnosis is critical because APOL1 is a fast-progressing condition.

Your Treatment Options

Available treatments for APOL1 kidney disease are the same as for other common forms of kidney disease. It is important to begin therapy right away. APOL1 kidney disease can advance to kidney failure at a faster than average pace. It is important to initiate therapy early in the course of disease.

Several companies are developing new drug therapies for people with high-risk APOL1 genotypes. If these medicines are found to be effective, it will make testing for APOL1 an important part of a patient’s clinical evaluation.

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Clinical trials are another treatment option.

Your doctor helps you find the right study for you. These trials test more targeted treatments with potentially lower risks of side effects.

Some clinical trials enroll patients, based on their genetic testing results, to test the effectiveness of precision-based therapies targeted to specific genetic changes.

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Tips For Living With APOL1

Living with APOL1 kidney disease is just like living with any other kidney condition. Try these strategies to improve your quality of life:

Regular Check-Ups

See your doctor as scheduled to monitor your kidney function and quickly address any changes.

Find A Doctor You Trust

Essential for building a collaborative and supportive healthcare relationship, ensuring personalized care, and enhancing your overall well-being.

Exercise

Regular, moderate activity helps manage your blood pressure and weight and improves your overall well-being.

Complete Genetic Testing

Provides valuable information about your risk factors, enabling early detection and proactive management to prevent or delay the onset of kidney damage.

Advocate For Yourself

Take an active role in understanding your needs, communicating effectively with healthcare providers, and making informed decisions to prioritize your well-being.

Learn About APOL1

Vital for empowering yourself about progression, treatment options, and lifestyle modifications necessary for effectively managing your health and improving your quality of life.

Kidney Transplant APOL1 Kidney Disease

People with APOL1 kidney disease get the same benefits from a kidney transplant as patients with other forms of kidney disease. However, studies suggest that kidneys from people with high-risk APOL1 genotypes tend not to survive as long in kidney transplant recipients as do kidneys without these genotypes. Some transplant centers discourage living people with high-risk APOL1 genotypes from donating a kidney to someone else, as it may affect the donor’s risk of future kidney disease. Ongoing studies are trying to address this issue

Support

Get help coping with the challenges of living with APOL1 kidney disease through support groups. Connect with others who understand your journey, share experiences, and find comfort in knowing you’re not alone.

Nutrition

Eating a kidney-friendly diet can help manage the symptoms and progression of your RKD. Learn more about a kidney-friendly diet and get our cookbook.

Related Resources

Video

Understanding Rare Kidney Diseases: The Role of Genetic Testing

Educational Materials

Understanding Kidney Disease: Fact vs. Myth

Informational Documents

Does Kidney Disease Run in Your Family?

Fact Sheet

APOL1 Kidney Disease

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