Did you know that there’s a specific type of kidney disease that affects Black communities more than others? It’s called APOL1-meditated kidney disease (AMKD), and understanding it could be life-changing for you or someone you love. Let’s dive into the top 10 things you need to know about this condition and how you can take control of your kidney health.
1. APOL1-mediated kidney disease is a genetic condition
APOL1 kidney disease, also known as APOL1-mediated kidney disease (AMKD), is a form of kidney disease caused by variants in the APOL1 gene. If you have two variants in these genes, your risk of developing AMKD increases significantly.
2. Black people are more likely to be affected
APOL1 kidney disease disproportionately affects the Black community. Understanding your risk and taking steps to manage your health is crucial.
“This disease is most likely to strike people who are of Western or Central African descent, which means people who are Black, African American or Afro Caribbean”, LaVarne Burton, President and CEO of the American Kidney Fund, shares.
3. Early detection is crucial
Catching APOL1 kidney disease early is vital. Regular check-ups, especially if you have a family history of kidney disease, diabetes, or high blood pressure, can help.
“With early detection, you can work with healthcare providers to make lifestyle modifications and manage the disease so, that, hopefully, if you know you’re at high risk, you don’t get it and if you do have chronic kidney disease, then you slow down that progression,” Burton adds.
4. Family history matters
Knowing your family history is crucial. If kidney disease runs in your family, discuss genetic testing with your healthcare provider.
“If you have family members who have chronic kidney disease, if you have diabetes, if you have high blood pressure – all of those are things that you want to look for as indications that you are at high risk,” Burton notes. “You want to have those conversations as quickly as possible with your healthcare providers and you want to carefully monitor and make those lifestyle changes.”
RELATED: Understanding a Genetic Kidney Disease Known as APOL1-Mediated Kidney Disease (AMKD)
5. Genetic testing is essential
Genetic testing can identify if you have the APOL1 gene variants that increase your risk of developing AMKD. This information can help tailor your healthcare plan.
“The only way to know whether you have those variants is through genetic testing,” Burton shares.
6. APOL1-mediated kidney disease progresses rapidly
Unlike other forms of kidney disease, AMKD can progress rapidly, often striking people when they’re young and otherwise healthy.
“The thing about AMKD is that it progresses very, very rapidly…It’s very aggressive,” Burton notes.“Sometimes people appear to be very healthy and suddenly they get this diagnosis of AMKD and it can progress very quickly into kidney failure.”
7. Access to care is a challenge
Black patients are less likely to receive kidney transplants compared to white patients. Increasing awareness about the availability of transplants and encouraging organ donation are critical steps.
“Black people who are dealing with kidney disease or kidney failure are less likely than their white counterparts to get a kidney transplant. So again, we need to make sure that we educate people about the availability of transplants as an option if you’re in kidney failure. And then we need to do a lot of work to increase the number of organs that are available, so that there is more likely to be one available,” Burton says.
8. Prevention is key
Several barriers can prevent timely and adequate care, including the lack of early symptoms and healthcare disparities.
“Kidney disease normally doesn’t show signs until you’re in the latter stages and so you have to look for other kinds of things. If you’re Black or African American, one thing to know is that you are four times more likely to end up in kidney failure”
9. Awareness is crucial
Black patients often face inequities in the healthcare system, including implicit bias and less frequent referrals to specialists. “We know that social determinants of health, our environments, and implicit bias in the medical system all play a role,” Burton notes.
Because of this, advocating for yourself is essential. Educate yourself about APOL1 kidney disease, ask questions, and engage in conversations with your healthcare providers. “Patients need to arm themselves with as much information as they can,” Burton adds.
10. Research is ongoing
The American Kidney Fund is working to address health inequities in the kidney care system, increase access to transplantation and home dialysis care, and explore unknown causes of kidney disease.
“We’re focusing on a number of efforts around including prevention, inclusion in clinical trials, increasing transplants and home dialysis care, and addressing issues of inequity,” Burton notes. “Another area we’re focusing on is unknown causes of kidney disease. Many people with kidney disease or kidney failure don’t know what caused it, which is important because it can affect treatment and outcomes. For example, in cases of genetic-based diseases, other family members should be tested. We’re also dealing with issues of access to new and innovative drugs and therapies, as well as overall affordability and access. These are areas we’re focusing on because we want to ensure that everyone impacted by this disease, regardless of their ethnic, racial, or socioeconomic background, can get the care they need. We’re focusing on getting to the root cause of the disease because we know that’s the best way to get to the right therapy and involve families in the process.”
By understanding these facts, you can take control of your health and work towards preventing or managing APOL1-mediated kidney disease. Remember to consult with your doctor or a geneticist about your risk factors and discuss genetic testing options.
To learn more about your genetic makeup and how it may impact your health, visit the American Kidney Fund.
