AMKD Awareness Day 2024 (US): Assist the American Kidney Fund in observing AMKD Awareness Day by gaining a deeper understanding of the disease and the potential influence of one’s background on kidney health. In observance of National Minority Health Month and on the last Tuesday of April, AMKD Awareness Day seeks to increase public knowledge regarding APOL1-mediated kidney disease.
AMKD is a collection of kidney diseases associated with specific African descent and characterized by severe and rapid progression of kidney disease. It is characterized by apolipoprotein L1 (APOL1) gene mutations. All individuals possess two copies of the APOL1 gene; however, individuals with Western and Central African heritage, encompassing Black, African American, Afro-Caribbean, and Latina/Latino descent, face an elevated likelihood of harboring a mutation in either one or both APOL1 genes. Individuals who have two mutations are more susceptible to developing focal segmental glomerulosclerosis (FSGS) and other genetic forms of kidney disease.
The History of AMKD Awareness Day
Less than two decades ago, the link between APOL1 gene alterations and kidney disease was novel. This study helped explain renal disease racial differences through genetics. African Americans are over four times more likely than white Americans to need dialysis or a transplant for kidney failure. West and Central Africans with APOL1 gene variants can develop kidney failure, but social determinants of health, institutional racism, and lack of preventative care are the main causes of renal disease inequalities.
Unfortunately, many people, including doctors, are unaware of APOL1-mediated renal illness. AMKD Awareness Day aims to raise awareness of the condition nationwide by helping affected communities identify symptoms, understand their risk, and share information about testing and prevention with their families, communities, and healthcare providers.
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AMKD Awareness Day 2024 (US) Activities
1. Obtain More Information
Explore the influence of our genes on kidney health and contribute your knowledge at KidneyFund.org/APOL1Aware.
2. Distribute via social media
Make use of the materials contained within the AMKD Awareness Day Community Toolkit, such as sample social media posts (accompanied by the hashtag #APOL1aware) and images suitable for sharing across various social media platforms.
3. Describe Your AMKD Experience
Observe and distribute videos created by AMKD patients, or record your own!
Five Facts Regarding the ApoL1 Gene
- Individuals of western and central African heritage face an elevated susceptibility to developing a mutation in either one or both APOL1 gene copies. This includes individuals who identify as Latina/Latino, Black, African American, or Afro-Caribbean.
- The APOL1 gene encodes proteins that are involved in immunity, the body’s innate defense mechanism against pathogens. Several centuries ago, the mutation linked to African sleeping sickness evolved as a means of protecting the individual from a parasite (transmitted by the tsetse fly) that is responsible for the disease. It is now understood that APOL1 gene mutations, although conferring protection against a specific disease, also elevate the likelihood of substantial kidney injury in certain individuals.
- The precise prevalence of AMKD remains unknown, as the involvement of APOL1 gene mutations in kidney disease was only identified by scientists in 2010. 13% (or 1 in 8) of African Americans, according to estimates, have two APOL1 gene mutations.
- The presence of two copies of the high-risk APOL1 gene mutations does not ensure the onset of kidney disease. Individuals have an increased likelihood of developing kidney disease (one in five), but this condition typically manifests subsequent to exposure to an environmental trigger—such as inflammation or an infection like COVID-19—which functions as a “second hit” and further amplifies the renal damage. Nonetheless, you might not be aware of your “second hit”; therefore, if you know whether or not you have the genetic mutations, you can make more informed lifestyle decisions to safeguard your kidneys and monitor your kidney health more closely.
- Genetic testing is the only method to determine whether kidney disease is caused by APOL1 gene mutations. If you are interested in undergoing a genetic test, consult your physician about the possibility that they can place the order or refer you to a genetic counselor. The AKF’s genetic counseling guide contains additional details regarding genetic testing, such as what to anticipate, the advantages of genetic testing, eligibility for low or no-cost tests, the companies that provide these tests, and preparation advice.
FAQs for AMKD Awareness Day
Define the APOL1 gene.
The APOL1 gene encodes a protein that aids in the defense against infections by the immune system. One copy of the gene was contributed to you by each parent.
What is the relationship between the APOL1 gene and kidney disease?
While diabetes and hypertension are the leading causes of renal disease, genetic factors also contribute. In 2010, researchers identified the function of APOL1 gene mutations in kidney disease. Acute kidney disease (AMKD) mediated by APOL1 can result in cell death in the kidney or injury to blood-filtering kidney tissue. This can result in scarring and damage to the kidneys, which can ultimately cause renal failure.
Who is at a greater risk of possessing an APOL1 gene mutation?
There is an increased likelihood that individuals of western and central African descent, including those who identify as Black, African American, Afro-Caribbean, or Latina/Latino, will possess a mutation in either one or both APOL1 alleles.
How can I determine if I have mutations in the APOL1 gene?
In order to ascertain the presence of APOL1 gene mutations, genetic testing is the sole viable method. This testing would utilize a blood or saliva sample to search for gene mutations.
When the cause of kidney disease is unknown or when contemplating kidney donation, genetic testing may be something that you or your physician wish to investigate. If you know that a member of your family is a carrier of the APOL1 gene mutation, you may also wish to test.
The genetic test can be prescribed by your physician, or alternatively, they may refer you to a genetic counselor, who possesses specialized knowledge in both genetics and counseling. Discuss your options with your physician regarding genetic testing, or request a referral to a genetic counselor for further information.
What preventative measures can I implement upon discovering that I have APOL1 gene mutations?
At this time, no therapeutic interventions exist for APOL1-mediated kidney disease. Nonetheless, precautions can be taken to safeguard the kidneys and advance overall well-being.
The following may be included in the plan that your physician develops with you to prevent or delay the progression of kidney disease:
- Consultations with your physician to evaluate your kidneys’ health via urine and blood
- Screening for and controlling hypertension and diabetes
- A plan for healthful eating. Restrictions may be incorporated into your dietary regimen, including the consumption of salt (sodium). Gain knowledge regarding healthful eating.
- Taking all prescribed medications as prescribed by your physician
- Active for a minimum of thirty minutes per day, seven days per week
- Cessation of smoking or tobacco use
AMKD AWARENESS DAY DATES
| Year | Date | Day |
|---|---|---|
| 2024 | April 30 | Tuesday |
| 2025 | April 29 | Tuesday |
| 2026 | April 28 | Tuesday |
| 2027 | April 27 | Tuesday |
| 2028 | April 25 | Tuesday |
