How to talk to children about Huntington’s disease

Last updated July 28, 2025, by Elena Schmidt

Parenting with Huntington’s disease means navigating complex changes while staying connected to your children. It also means finding honest, age-appropriate ways to talk about what’s happening to you, and continuing those conversations over time.

Talking to children about Huntington’s disease can help them process what they’re seeing, ask questions, and feel more secure as the condition progresses. But how do you actually talk to your kids about something this big?

It ultimately comes down to your child’s age, personality, and your readiness to begin an open and ongoing conversation.

When’s the right time?

You may wonder when or how to start explaining Huntington’s to your kids after the diagnosis. There’s no perfect moment, but waiting too long may make the changes feel scarier or more confusing. Starting early gives your child the chance to process the information in a calmer, more supported way.

Start before symptoms become obvious

You may not want to wait for physical or emotional changes to start appearing. Kids may already sense something is different, even if they can’t name it. Talking early, before Huntington’s symptoms become noticeable, gives your child a basic understanding of the condition and helps prevent confusion later on.

Talk while things are still relatively calm

Family conversations about Huntington’s may work best in a relaxed, private space where everyone has time to process the information afterward. Choosing a time when the household feels emotionally stable allows your child to absorb the information without added stress.

It also allows you to answer questions gradually, rather than during a crisis, such as a fall, job loss, or hospital visit.

Don’t wait for them to ask

Occasionally, kids remain silent even when they know something is off. Some worry they’ll upset you. Others assume they’re imagining things or that how you’re feeling is their fault.

If you wait for your children to ask questions, they may carry confusion or fear for far too long. Consider being proactive so you can take the pressure off and show your child it’s safe to talk.

Share over time, and keep the conversation going

Talking to your child about Huntington’s isn’t a one-time event. It’s the start of an ongoing conversation. So you may want to start talking to your children when they’re young, using age-appropriate ways to explain the disease.

Allow the conversation to evolve as your child matures. This steady communication builds trust and helps your child feel prepared for how life will change.

Talking to kids at different ages

What kids need to know about Huntington’s often depends on their age, what they’ve seen, and how much they’re ready to understand. The goal is to meet them where they are and listen more than you speak.

Young kids

Preschool and early elementary-aged children tend to think in concrete terms. They might notice changes in how you walk or talk, but they won’t yet understand genetics or the concept of the future.

A simple explanation, like “Mommy has a brain illness that makes her body move differently,” is often enough to start. You might explain that Huntington’s makes a person angry or tired more easily, but you don’t need to go into inherited risk at this stage.

You can also use activities like reading, art, or quiet play to create space for simple conversation, as young kids often express their thoughts through drawing, storytelling, or pretend play. You might see them act out changes they’ve noticed or ask questions through their toys instead of with words. These are helpful windows into what they’re feeling or wondering.

School-age children

Kids in upper elementary to middle school are more aware of the world around them. They may notice symptoms like shaky hands, irritability, or forgetfulness, and they’ll have more questions for you. This age may be an appropriate time to introduce basic facts about Huntington’s as a genetic condition, emphasizing that it affects everyone differently and over time.

Let your children lead the conversation. If they ask how someone got Huntington’s, you might say, “It’s something people are born with, but it usually doesn’t show up until later in life.” You can also start teaching them how to discuss Huntington’s with others, such as in school, with friends, or extended family, if and when they are ready.

Teens

Teenagers may need more space and time to process their feelings. They may spiral into anger or grief. They may become explosive, or they may pull away. Try to let them know that their reactions are valid and that support is available, whether it comes from you, a counselor, or a peer group.

Teens may start researching Huntington’s on their own, or ask direct questions about their own genetic risk. You don’t have to have every answer. Instead, focus on what’s true right now, and share information in small, honest doses.

Talking to kids about inherited diseases doesn’t mean covering everything at once. It means showing up for them with care and clarity, one conversation at a time.

Finding the right words

It’s normal to feel unsure about what to say to your child about Huntington’s. Helping children understand chronic illness often starts with preparation.

Before you talk to your child, you may want to:

think through your feelings about Huntington’s and how much you’re ready to share
choose a time and setting where your child feels comfortable and safe
talk to your partner, a trusted family member, or a healthcare provider about what you plan to say
write down a few phrases if you’re worried about getting emotional or losing your words.

When it’s time to talk, aim for clear, kind language that balances honesty with comfort. Try saying something like, “Huntington’s is a brain disease that can make it harder to move, talk, or remember things.” Avoid vague explanations that can confuse kids, like “Daddy isn’t feeling well.”

And try not to overload your child with information. You don’t need to explain the stages of Huntington’s, genetics, or every possible symptom at once. Focus on what your children are seeing right now, and let their questions guide what comes next.

Addressing common questions

Children are often more capable of handling difficult truths than we give them credit for. Discussing genetic risk with children can be hard. Broaching mortality can be even more challenging.

But what causes distress isn’t always the information itself. It’s the confusion and silence around it. When you answer common questions in ways your child understands, the information becomes a regular part of everyday life.

Here are a few questions you may be asked, along with guidance on how to answer them.

Q: Why is Dad acting differently?
A: Dad has a brain illness called Huntington’s disease. It affects how he moves, talks, eats, and feels.

Q: Did I do something to cause it?
A: No. Huntington’s happens because of a gene that affects the brain. It’s nobody’s fault. It just happens in some families.

Q: Can I catch it?
A: No. Huntington’s isn’t contagious. You can’t catch it from someone else like a cold or flu.

Q: Is Mom going to die?
A: That’s a really hard question, and it’s okay to ask. People can live for many years, sometimes decades, with Huntington’s. We don’t know exactly when, so we’re focused on taking care of each other and making the most of our time.

Q: How did Mom get Huntington’s?
A: Mom inherited the gene that causes Huntington’s from her parent. She was born with it.

Q: Am I going to get Huntington’s?
A: If one parent has Huntington’s, there’s a chance you could have the gene, too. But even if you do, it doesn’t mean you’ll get sick. There are people called genetic counselors who can help explain more when you feel ready.

Q: Why didn’t you tell me sooner?
A: I wanted to wait until I had the right words. But I know now there’s no perfect time. You deserve to know what’s happening, and I’m here to talk whenever you’re ready.

Q: What will happen to me if something happens to you?
A: If something happens to me, [Name of guardian] will care for you. We’ve made sure you’re safe, no matter what.

Q: Why don’t doctors have a cure?
A: Researchers are trying hard to find one. There are also clinical trials that some families join to help. If you’re curious, we can look into those together.

Q: How am I supposed to deal with this?
A: You are not alone. You have me and our family. You can also talk to a counselor, join a support group, or connect with other kids all over the country going through the same thing. We can look at those options together.

Helping your child cope

Your children’s understanding of Huntington’s will grow over time, and so will their feelings. Emotions often run highest as the disease progresses, or during moments like a parent’s fall, a job loss, a hospitalization, or a change in caregiving.

Living with Huntington’s as a family means holding space for big emotions and finding ways to process them together.

There are a few simple ways you can help to offer emotional support:

Normalize your children’s emotions, and let them know it’s okay to feel sad, confused, angry, or scared.
Let them express emotions in their own way, whether that’s through talking, writing, drawing, or playing.
Stick to familiar routines, such as consistent mealtimes and bedtimes, to help your child feel safe, even though other aspects of life feel uncertain.
Watch for signs your children are struggling, such as changes to their sleep, appetite, or mood, and seek extra support if needed.

Getting support as a family

If emotions become overwhelming or communication breaks down, it may be time to seek outside support through family therapy, support groups, or school-based services. That doesn’t mean something is wrong. It means your family is navigating something hard and could use more tools to process it.

Family conversations about Huntington’s tend to improve when everyone feels heard and understood. With the right help, communication can become easier over time, and more meaningful.

The Huntington’s Disease Society of America offers family resources and access to social workers and care teams through its Centers of Excellence. For younger kids and teens, the Huntington’s Disease Youth Organization offers videos, guides, and online peer assistance designed just for them.

Finding support early on can help children coping with a parent’s illness feel more prepared and less isolated. It also gives the whole family space to adapt together as everyone learns to communicate with greater ease.

Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.