Caring for a child with chronic kidney disease (CKD) can be challenging. When genetics are involved, it can bring unique concerns. One form of CKD is linked to a specific genetic variation known as APOL1-mediated kidney disease (AMKD). This condition mostly affects people of African, Caribbean, and Latin American descent. Understanding (AMKD), especially in children, can empower caregivers to make informed decisions and explore opportunities, such as clinical trials, for their child’s treatment and future health.
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What is APOL1-mediated Kidney Disease (AMKD)?
The APOL1 gene helps the body fight certain infections, but some variants (G1 and G2) of this gene are associated with a higher risk of kidney disease. These variants are more common in people of African descent. Carrying one or both of these variants can increase a person’s risk of developing kidney disease, especially if they carry two variants.
While many people with APOL1 variants will never experience kidney disease, those who do may face a more aggressive form that can progress faster than other types of CKD. This is especially concerning in children, as AMKD can have a lasting impact on their growth, development, and quality of life.
Recognizing AMKD Symptoms in Children
CKD in children may not show symptoms in the early stages, making it challenging to recognize. Symptoms of more advanced CKD in children may include:
- Fatigue and weakness: Reduced kidney function can cause anemia, making children feel more tired than usual.
- Swelling: Fluid buildup may lead to swelling, especially in the legs, feet, or face.
- Loss of appetite: Kidney issues can impact digestion, causing a child to eat less or complain of nausea.
- Slowed growth: CKD can interfere with growth and bone development in children.
- High blood pressure: This can develop early in AMKD, sometimes before any other symptoms appear.
It’s important for caregivers to monitor their child’s health and consult their doctor if these symptoms arise, especially if there is a family history of kidney disease.
How is AMKD Diagnosed in Children?
If a child is suspected of having CKD, doctors typically start with blood and urine tests to assess kidney function. To determine if APOL1 gene variants are present, a genetic test may be performed. Knowing whether a child has AMKD can help caregivers and healthcare providers make informed decisions about treatment and lifestyle adjustments to slow disease progression.
Managing AMKD in Children
Once a child is diagnosed with AMKD, a healthcare provider may recommend various strategies, including:
- Dietary adjustments: Reducing sodium, protein, and potassium in the diet can help ease the kidneys’ workload.
- Medications: Blood pressure medications and other supportive treatments can slow CKD progression and relieve symptoms.
- Regular monitoring: Frequent check-ups allow doctors to keep an eye on kidney function and address changes early.
Management is tailored to each child’s specific needs, with an emphasis on promoting growth and overall well-being.
Exploring Clinical Trials as an Option
When it comes to rare and genetically linked conditions like AMKD, clinical trials can be a valuable option. Clinical trials allow researchers to test investigational treatments.
Participating in a clinical trial may benefit children and their families in multiple ways:
- Access to specialized study-related care: Clinical trials often offer support and resources.
- Contribution to future treatments: Families who take part in research play a crucial role in advancing science for future generations affected by AMKD.
The AMPLITUDE Clinical Research Study: A Unique Option for Children with AMKD
The AMPLITUDE clinical research study is designed to explore an investigational treatment specifically for APOL1-mediated chronic kidney disease. This study aims to provide insights into better ways of managing and potentially treating this genetic form of CKD. Caregivers who choose to enroll their child in the AMPLITUDE study will receive study-related medical assessments, monitoring, and treatments.
How Caregivers Can Get Involved
If you are caring for a child with AMKD, consider the AMPLITUDE clinical research study. Talk to your child’s healthcare provider about the study or click here to learn more.
Help contribute to the advancement of AMKD care by considering participation in the AMPLITUDE study today.
References
American Kidney Fund. APOL-1 Mediated Kidney Disease
American Association of Kidney Patients. APOL 1 Gene
National Kidney Foundation. APOL1-Mediated Kidney Disease (AMKD)
Neph Cure for Rare Kidney Disease. APOL1 Kidney Disease
