If you’ve just been diagnosed with autosomal dominant polycystic kidney disease (ADPKD), it’s only natural that you’d have a lot of questions and concerns.
When should you begin treatment?
Will your daily routine need to change?
And how will this affect your children?
Addressing this last concern can be particularly challenging. But Jillian Warejko, MD, a pediatric kidney specialist at Yale Medicine, emphasizes the importance of preparing your kids for what lies ahead.
“Knowing your own health history is very powerful,” Warejko says. “So we try to teach kids to empower themselves and advocate for themselves.”
Your approach should depend on your child’s age, and it may be best to have multiple conversations over time.
Here are some ideas to help get you started.
How It’s Inherited
If your children are teenagers or young adults, you can explain the basics of this inherited genetic disease. Warejko explains that a faulty gene on a non-sex chromosome is responsible for ADPKD. This means that regardless of whether your child is male or female, there’s a 50% chance that they’ve inherited this mutated gene from you. And if they have the disease, there’s a 50% chance that they’ll pass it on to their own children.
You may want to give younger kids less information, but you should still introduce the topic of ADPKD in a way that’s appropriate for their age and not frightening.
Fear can discourage people from seeing a doctor, Warejko explains. That’s why, in her practice, she describes ADPKD like this:
“It sounds as though a few family members have had this illness called kidney disease. And today we’re visiting to make sure that, if you have kidney disease too, we’re doing everything in our power to keep you as healthy as possible.”
She also tells kids that the best time to treat this disease is early, while their kidneys are still “good” and functioning normally. And the best way to do that, she says, is to “make sure you’re visiting us regularly.”
Symptoms to Watch For
If your kids have been diagnosed with ADPKD, they may not experience any symptoms during their childhood or early adulthood.
“The disease can be relatively quiet in the early years,” says Neera Dahl, MD, PhD, a kidney specialist with Yale Medicine.
Nevertheless, Dahl believes it’s important for parents and children to be aware of the potential symptoms to look out for.
Encourage your child to speak with you if they notice:
- Back or side pain
- Blood or pain when they urinate
- Any other changes in their urine
- Frequent headaches
Encourage your kids to keep track of details about their health.
“If the doctor tells them their blood pressure is a little high, tell them to write it down,” Warejko says. “Everyone has a way to take notes wherever they go, because our phones have ‘notes’.”
Sharing your own experiences with the disease can also help your children understand.