Autosomal dominant polycystic kidney disease (ADPKD) is caused by an inheritable genetic mutation.
If you or your partner has ADPKD, any child you have might also inherit the affected gene. If they do, they’ll likely develop symptoms at some point in their life.
In most cases of ADPKD, symptoms and complications don’t appear until adulthood. Sometimes, symptoms develop in children or teenagers.
Read on to learn how you can talk to your child about ADPKD.
If you or your partner receives a diagnosis of ADPKD, consider making an appointment with a genetic counselor.
A genetic counselor can help you understand what the diagnosis means for you and your family, including the chances that your child has inherited the affected gene.
The counselor can help you learn about different approaches to screening your child for ADPKD, which might include blood pressure monitoring, urine tests, or genetic testing.
They can also help you develop a plan for talking to your child about the diagnosis and how it might affect them. Even if your child hasn’t inherited the affected gene, the disease may affect them indirectly by causing serious symptoms or complications in other family members.
You might be tempted to hide your family history of ADPKD from your child in order to spare them anxiety or worry.
However, experts generally encourage parents to talk to their children about inheritable genetic conditions starting at a young age. This may help promote trust and family resilience. It also means that your child may start developing coping strategies at an earlier age, which can serve them for years to come.
When you talk to your child, try to use age-appropriate words that they’ll understand.
For example, young children may be able to understand the kidneys as “body parts” that are “inside” them. With older children, you can start using terms like “organs” and help them understand what the kidneys do.
As kids get older, they can learn more details about the disease and how it might affect them.
Let your child know that if they have any questions about ADPKD, they can share them with you.
If you don’t know the answer to a question, you may find it helpful to ask a healthcare professional for the right information.
You may also find it helpful to conduct your own research using credible sources of information, such as:
- Genetic and Rare Diseases Information Center
- Genetic Home Reference
- National Institute of Diabetes and Digestive Kidney Disease
- National Kidney Foundation
- PKD Foundation
Depending on your child’s maturity level, it may help to include them in your conversations with healthcare providers and research efforts.
Your child may have many feelings about ADPKD, including fear, anxiety, or uncertainty about how the disease might affect them or other family members.
Let your child know that they can talk to you when they’re feeling upset or confused. Remind them that they’re not alone and that you love and support them.
They might also find it helpful to talk with someone outside of your family, such as a professional counselor or other children or teenagers who are coping with similar experiences.
Consider asking your doctor if they know about any local support groups for children or teenagers coping with kidney disease.
Your child might also find it helpful to connect with peers through:
- an online support group, such as Nephkids
- a summer camp affiliated with the American Association of Kidney Patients
- the annual teen prom held by Renal Support Network
If your child develops signs or symptoms of ADPKD, early diagnosis and treatment are important. Although symptoms typically develop in adulthood, they sometimes affect children or teenagers.
Ask your child to let you or their doctor know if they develop unusual feelings in their body or other potential signs of kidney disease, such as:
- back pain
- abdominal pain
- frequent urination
- pain while urinating
- blood in their urine
If they develop potential symptoms of ADPKD, try not to jump to any conclusions. Many minor health conditions can cause these symptoms, too.
If the symptoms are caused by ADPKD, your child’s doctor can recommend a treatment plan and lifestyle strategies to help keep them healthy.
When you talk to your child about ADPKD, emphasize the role that lifestyle habits can play in keeping members of your family healthy.
For any child, practicing healthy lifestyle habits is important. It helps to promote long-term health and lowers the risk of preventable diseases.
If your child is at risk of ADPKD, then eating a low-sodium diet, staying hydrated, getting regular exercise, and practicing other healthy habits may help prevent complications later on.
Unlike genetics, lifestyle habits are something that your child has some control over.
A diagnosis of ADPKD may affect your family in many ways.
A genetic counselor can help you learn more about the condition, including the effects it might have on your kids. They can also help you develop a plan for talking to your kids about the disease.
Communicating openly may help build trust and family resilience. It’s important to use age-appropriate terms, invite your child to ask questions, and encourage them to talk about their feelings.