Living with Autosomal Dominant Polycystic Kidney Disease (ADPKD)
Introduction
When you find out you have Autosomal Dominant Polycystic Kidney Disease (ADPKD), there is a lot to think about. You may have many questions regarding treatment, daily life changes, and how it will affect your children. These concerns can be particularly challenging, especially when it comes to discussing them with your kids. However, it is crucial for children to know what to expect in order to empower themselves and advocate for their own health.
Empowering Your Children
Jillian Warejko, MD, a pediatric kidney specialist at Yale Medicine, emphasizes the importance of teaching children about their medical history. She believes that knowing their own medical history can be empowering and encourages kids to stand up for themselves. When discussing ADPKD with your child, consider their developmental age and tailor the conversation accordingly. It may be helpful to space out conversations over time to ensure they understand the information fully.
Topics to Discuss
Here are some topics that can help you get started:
- How did you get it? For teenagers or young adults, you can explain the basics of ADPKD as a genetic disease. ADPKD is caused by a defective gene on a non-sex chromosome, which means there is a 50% chance of inheriting the mutated gene from you, regardless of gender. If your child has the disease, there is also a 50% chance they will pass it on to their children. For younger children, use age-appropriate, non-scary terms to explain ADPKD.
- Symptoms to look out for: While children may not experience symptoms in their early years, it is essential for them to know what symptoms to pay attention to. Teach your child to speak up if they notice back or side pain, blood or pain during urination, changes in urine, or frequent headaches. Encourage them to keep track of their health details, such as blood pressure, by writing them down.
- When and how to be diagnosed: Regular well visits are usually sufficient for children, but monitoring for high blood pressure or blood in the urine is important. For teenagers and young adults, annual checkups are vital. Even if they feel healthy, they could have underlying conditions associated with ADPKD, such as high blood pressure or cysts. Diagnosis can be done through imaging tests like ultrasounds, CT scans, or MRIs. Genetic testing may also be an option, but it’s important to consult with a genetic counselor to determine if it’s suitable.
- Set a good example: Teach your children healthy habits to protect their kidneys, such as drinking plenty of water, maintaining a low-salt diet, engaging in regular physical activity, consuming fresh fruits and vegetables, and avoiding processed and fast foods. Keep in mind that not everyone has equal access to resources, so find creative ways to incorporate healthy habits into your family’s lifestyle.
Life with ADPKD
The good news is that treatment for ADPKD has advanced significantly in recent years. In 2018, the FDA approved tolvaptan (Jynarque), which is the first drug to treat ADPKD in adults. Tolvaptan can slow down the formation of cysts in the kidneys, potentially preventing kidney failure.
Living with ADPKD means being proactive in managing your health. Regular checkups, monitoring symptoms, and following a healthy lifestyle are crucial to maintaining kidney function. It’s essential to stay informed, empower yourself and your children, and communicate openly with your healthcare team throughout your journey with ADPKD.
Conclusion
Autosomal Dominant Polycystic Kidney Disease (ADPKD) can be a challenging diagnosis to navigate, especially for children. However, by empowering your children with knowledge, discussing important topics, and setting a good example, you can help them understand and manage their condition effectively. Additionally, staying informed about advancements in ADPKD treatment and maintaining a proactive approach to healthcare can significantly improve outcomes and quality of life for you and your family.
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There is a lot to think about when you find out you have autosomal dominant polycystic kidney disease (ADPKD).
When do you start treatment?
Will your daily life change?
How will it affect your children?
The latter can be really difficult. But Jillian Warejko, MD, a pediatric kidney specialist at Yale Medicine, says it’s important for kids to know what to expect.
“Knowing your own medical history is very powerful,” Warejko says. “That’s why we try to teach kids to empower themselves and stand up for themselves.”
You should tailor your conversation based on your child’s developmental age. And you may want to space out your conversations over time.
Here are some topics to get you started.
How did you get it
If your children are teenagers or young adults, you can discuss the basics of this autosomal dominant genetic disease. Warejko explains that a defective gene on a non-sex chromosome causes ADPKD. That means that whether your child is male or female, there is a 50% chance that they will receive this mutated gene from you. And if they have the disease, there is a 50% chance that they will pass it on to their children.
You may need to give younger children less information. You can still mention ADPKD. But use age-appropriate, non-scary terms.
“We don’t want kids to be afraid,” Warejko says. “Fear can make people not want to go to the doctor.”
In his practice, Warejko describes ADPKD like this:
“It seems like a couple of family members have had this illness called kidney disease. And the reason you’re visiting me today is because we want to make sure that if you have kidney disease too, we do everything we can to make sure you stay as healthy as possible.”
He also tells children that it is best to treat this disease early, when their kidneys are “good” and still functioning normally. And the best way to do that, she says, is to “make sure you check in with us.”
Symptoms to look out for
If your children have ADPKD, they may not have any problems as children or young adults.
“The disease can be relatively silent in those early years,” says Neera Dahl, MD, PhD, a kidney specialist at Yale Medicine.
That said, Dahl believes parents and children should know what to pay attention to.
Tell your child to speak up if he or she notices:
- Back or side pain
- Blood or pain when urinating
- Any other change in urine
- Frequent headaches
Encourage your children to keep track of the details of their health.
“If your doctor tells you your blood pressure is a little high, write that number down,” Warejko says. “Everyone has a ‘paper’ wherever they go because our phones have ‘notes’.”
You can also share how the illness feels to you. But keep in mind that your child may not have the same experience.
“The complicated thing about ADPKD is that everyone is a little different, even among family members,” Warejko says. “But I always encourage families to be open with each other.”
When and how to be diagnosed
Children may only need regular well visits once a year. But your doctor should monitor you for high blood pressure or blood in your urine.
“If they don’t, that’s reason to investigate further,” says Dahl. “Otherwise, it’s okay to monitor the kids to see how they’re doing.”
Warejko emphasizes the importance of annual checkups during your teens and early 20s. Sometimes young adults who might have ADPKD skip these screenings, she says, because they feel healthy. Although they could have high blood pressure or cysts and not know it.
“One of the hardest parts about kidney disease is that you don’t feel it until you feel it,” he says.
To diagnose ADPKD, you may have:
Image tests. The most common is an ultrasound, says Dahl. It is a painless test that can take images of the urinary tract or kidneys. Other imaging tests include a computed tomography (CT) scan or magnetic resonance imaging (MRI).
Genetic test. This is a sure way to tell if you have ADPKD. But it may not be the right choice for everyone, especially young children. “There is a lot of debate about what it means to perform genetic testing on someone under 18, when she is not of an age where she can give full consent,” Warejko says. “Not everyone wants to know what their genetic predisposition is.”
Ask your doctor to refer you to a genetic counselor. They can help you determine if this is something you or your family might want to do.
Screening prior to implantation. This is for your adult children who want to start a family. People using in vitro fertilization (IVF) can have a special test to detect ADPKD in fertilized eggs. It is not 100% accurate. But it may be an option for people who want to take steps to reduce their chances of passing on the gene, Dahl says.
Set a good example
You can teach your children some healthy habits to protect their kidneys. If they ask why, tell them you want to help them achieve their goals. That’s what Warejko does. He asks the children what they want to be when they grow up. Then he tells them, “I want you to be successful and part of that is being healthy.”
His tips include:
- Drink plenty of water.
- Eat a low-salt diet.
- Get enough physical activity.
- Eat plenty of fresh fruits and vegetables.
- Avoid processed and fast foods.
Warejko knows that it’s not easy for everyone to make these healthy changes. Some families may not have access to fresh produce or live in a neighborhood where it is safe to go for a walk. That’s why he strives to exchange ideas with children and parents. She will help them find ways to get healthy foods or exercise at home. “I try to specifically ask, ‘What are the restrictions we need to work indoors?'”
Life with ADPKD
Treatment has advanced a lot in recent years. In 2018, the FDA approved tolvaptan (Jynarque), the first drug to treat adults with ADPKD. It can slow down the formation of cysts in the kidneys.
“I think tolvaptan is going to change the trajectory and we won’t see as many people end up with kidney failure,” Warejko says. “My hope is that the snowball keeps rolling downhill.”
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