.png)
What You Need to Know About APOL1-Mediated Kidney Disease (AMKD)
Understanding your genetic risk is the first step to protecting your kidneys.
What is AMKD?
APOL1 is a gene that helps protect your body from certain infections. Centuries ago, people in West and Sub-Saharan Africa developed two variants of this gene, called G1 and G2, that shielded them from a deadly parasitic disease. That was a strength, not a weakness.
Today, we know that people who inherit two copies of these genetic variants – one from each parent – have a higher risk of developing kidney disease. This is called APOL1-mediated kidney disease, or AMKD.
Having these variants does not mean you will get kidney disease. But knowing your status gives you and your doctor a major advantage.
Could this Affect You?
You may be at higher risk if you:
Are Black, African American, Afro- Caribbean, or Afro-Latino
Have a family history of kidney disease
Have high blood pressure, diabetes, HIV, or lupus
About 6 million Black/African Americans carry the high-risk genotype, and most don't know it.
What to Watch For
AMKD often has no symptoms early on. As it progresses you may notice:
Foamy or bubbly urine
Swelling in your legs, ankles, or face
High blood pressure
Fatigue or weakness
If you notice any of these, talk to your doctor. The sooner the better.
How is it Diagnosed and Treated?
Urine test: checks for protein, the earliest sign of kidney damage
Blood test (eGFR): measures your kidney filtering rate
Genetic testing: the only way to know if you carry the APOL1 variants
Kidney biopsy: in some cases, recommended by your doctor
Managing AMKD
No cure yet, but treatment can slow the disease significantly. Options include blood pressure medications, a low-salt diet, exercise, and monitoring. New treatments are in clinical trials now.
Track these three numbers on every visit:
Proteinuria: protein in your urine – less than 30 mg/g is normal
eGFR: your kidney filtering rate – 60 or above is normal
Blood pressure: <120/80 mm Hg
Your Next Steps
You came to get screened today. That was the right move. Here is what to do next.
Ask about genetic testing. If kidney diseases runs in your family, ask your doctor about APOL1 testing.
Know your numbers. After today, keep track of your urine protein, eGFR, and blood pressure.
Tell your family. This is genetic. Your relatives may be at risk and may not know it.
Consider clinical trials. If you do have the APOL1 genetic variant, consider enrolling in clinical trials.
Stay connected. The EMBARK Awareness offers support and resources for people living with kidney disease.
Key Takeaway
AMKD is serious but catching it early changes everything. Talk to your doctor, know your numbers, and share what you learned today with the people you love.
Made possible by our generous supporters.
We are here for you.
We at EMBARK AWARENESS are excited to invite you to our upcoming Kidney Awareness Events! These events are designed to help you better understand your kidney health and to promote awareness in our community. Come alone or bring your family and friends for an informative and beneficial experience. We look forward to seeing you there!
CLICK BUTTON BELOW TO SEE OUR CURRENT SCHEDULE!
Download this educational material
Continue the conversation beyond the diagnosis.
Browse our latest patient features, educational guides, and event recaps to see how our community is redefining the path to wellness.
AIM
The EMBARK Awareness Fellows Program aims to create meaningful opportunities for Black/African American and other underrepresented students in medicine to grow as leaders in kidney health. As part of this national program, Fellows will collaborate on initiatives that align with EMBARK’s mission to reduce disparities in kidney disease outcomes.
OBJECTIVES
The program is designed to deepen medical trainees’ knowledge of kidney health while actively contributing to community outreach efforts aimed at reducing health disparities in kidney disease diagnosis and treatment. The program’s objectives include:
-
Fellows will create and disseminate education materials tailored to both medical trainees and community members to enhance kidney health literacy and promote preventive care.
-
Fellows will assist in recruiting and supporting a diverse group of medical student volunteers, helping to grow the EMBARK Students Program and foster a pipeline of future kidney health advocates.
-
Fellows will grow leadership skills by collaboratively designing, organizing, and implementing at least one kidney health awareness/screening event during the program year.
-
Each Fellow will establish a regular mentorship relationship with a nephrologist or related specialist, engaging in a minimum of three sixty-minute one-on-one meetings to discuss career development, clinical interests, and research opportunities.
HOW IT'S STRUCTURED
The EMBARK Awareness Fellows Program offers medical students the opportunity to engage in both collaborative and independent work while advancing kidney health equity. Fellows will work as a team to expand the EMBARK Awareness Students Program, recruiting student volunteers, organizing events, and promoting kidney health awareness. They will also mentor undergraduate participants in GlomCon’s Mentored Internship Program in Nephrology (MIPiN), fostering the next generation of nephrologists, clinicians, researchers, and advocates. The activities of the fellows will be directed by the EMBARK Awareness Student Programming Lead, Eunice Lamothe.
MEET EUNICE
Eunice Lamothe is an MS1 at Kaiser Permanente Bernard J. Tyson School of Medicine who has a deep interest in the intersection of public policy, community health, and clinical medicine. Before attending medical school, Eunice served as the Project Manager for Organizing Resilience, a national organization focused on resourcing community-based groups during times of climate disaster.
Eunice is a graduate of Boston University with a degree in Economics. During her time there, she served as a Research Assistant for the Black Women’s Health Study, an intern at the Massachusetts League of Community Health Centers, and as a political organizing intern for a senate primary campaign. Additionally, Eunice was deeply involved in developing campus-wide food access programming and developing service-learning curriculum for incoming students.
COMMUNITY SCREENING EVENTS
Each fellow will be responsible for hosting or supporting at least one EMBARK community-based kidney screening in their region, providing hands-on experience in community outreach and preventive health. In addition, every EMBARK Awareness Fellow will be paired with a dedicated mentor in nephrology or a related specialty, meeting regularly for individualized guidance on career development, clinical interests, and research pursuits.
