Carried from Childhood: Childhood Experiences and Adult Mental Health in Families with Huntington’s Disease

For many people raised in families affected by Huntington’s disease (HD), childhood isn’t just about scraped knees and schoolbooks. It can also mean living with uncertainty, emotional turbulence, and a silence that’s hard to navigate. While much of the focus is on the person with HD, a growing body of research is beginning to ask a different question: what about the children in these families? A recent study led by Dr. Ferdinando Squitieri and his team based in San Giovanni Rotondo, Italy, explored how growing up with a parent who has HD, may affect a child’s mental health later in adulthood. Sadly, the answer is yes, and this is a truth that requires our attention.

A Different Kind of Trauma

When we hear the word trauma, we might picture big, dramatic events that are easy to single out and identify. However, trauma can also come from smaller, repeated emotional experiences, especially in childhood, when we are still learning how to understand the world and our feelings.

It is important to remember that HD doesn’t just affect a person’s movement and mind (their ability to think, remember, and concentrate). It can also change how someone reacts emotionally, making them more irritable, withdrawn, or emotionally unpredictable. For some individuals with HD, these changes can appear before an official diagnosis.

For a child, this kind of environment can be deeply unsettling. A parent may lash out or become unusually distant. Imagine a child accidentally spilling their drink and being met with an outburst of anger or sharp criticism. Over time, the child learns to tread carefully, navigating the emotional landscape of the home like a minefield. 

They may not understand why their parent acts this way, and often, no one explains. Families might not know what is happening themselves, or may avoid talking about it out of fear, shame, or stigma.

Looking Back with Adult Eyes

In the study, Dr. Squitieri and his team recruited two groups of adults. One group included 38 people who had grown up with a parent with HD. The other group had 20 people who had no family history of HD or similar conditions.

Each person was asked a series of questions about their background, questions like their parent’s health (if they came from a family with HD), their childhood experiences, and their current emotional wellbeing. The questions gently explored whether someone had experienced abuse or neglect. They also asked about topics surrounding mental health, including anxiety, low mood, or stress, specifically focussing on how each person felt in the present day.

Researchers used statistics to look for patterns in the answers people gave in the questions. They compared different people who were in the same group, to see how people from different families with HD responded. They also compared responses between the two groups (people from families with HD and people from families who did not have HD). This enabled the researcher to understand whether there were links between childhood experiences and adult mental health.

People who had grown up in families with HD were more likely to experience emotional and psychological challenges in adulthood. This included feelings of low mood or overwhelm, and in some cases, trouble with thinking clearly or feeling connected to reality.

Emotional Echoes That Last

People who had grown up in families with HD were more likely to experience emotional and psychological challenges in adulthood. This included feelings of low mood or overwhelm, and in some cases, trouble with thinking clearly or feeling connected to reality.

However, what really stood out was why people from families with HD were struggling with their mental health in adulthood. The researchers found that it wasn’t always physical abuse or big, traumatic events that predicted mental health difficulties later in adulthood. 

More often, it was emotional abuse or neglect, things like constant criticism, hurtful words, or growing up in a home where emotions felt unsafe, unpredictable, or simply too difficult to talk about.

For children from families with HD, emotional experiences may shape how a person feels for decades to come.

Putting Feelings into Words

It is easy to read findings like this and feel a sense of heaviness. However, this research provides our HD community with understanding. It names what many people raised in families with HD have felt for years but could not always explain. This reminds us that emotional wellbeing matters, and that children in these homes may need more than just physical or practical support. They may need someone to listen, to believe them, and to help them make sense of what they are experiencing.

For adults who grew up in this kind of environment, it offers validation. If you’re struggling with mental health today, please know that it is never a personal weakness, or a random feeling. It could be something rooted in your past, something that started subtly, and has stayed with you. But that also means healing is possible. Support is possible, and available.

If you would like to learn more about support systems and resources available for young people impacted by HD, we encourage you to reach out to the Huntington’s Disease Youth Organization (HDYO), who has made available a wide range of resources, including access to peer support and connections to professionals in the community. You can also reach out to the Huntington’s Disease Society of America (HDSA) National Youth Alliance (NYA), who provides youth support groups, education days, and HD awareness. You are not alone, and support is available. 

It is easy to read findings like this and feel a sense of heaviness. However, this research provides our HD community with understanding.

A Quiet Kind of Bravery

Growing up in a family with HD can require a quiet kind of bravery, the kind that doesn’t always get recognised by others. The child who carefully tiptoes around a parent’s mood. The teenager who keeps the family secret. The adult who is still trying to make sense of it all.

This study reminds us that early emotional experiences matter for children growing up in families with HD. “The Things We Carried from Childhood” is not just a metaphor. For many in families with HD, it is a truth they live with every day. 

But carrying something for a long time doesn’t mean you have to carry it alone, or forever. With support, healing is not just possible for adults from families with HD, it is within reach.

Summary

• Growing up with a parent who has HD often means living with emotional unpredictability and silence.
• A study of 38 adults from HD families found higher rates of depression, anxiety, and overwhelm than from people not from HD families.
• Emotional abuse or neglect, not major traumatic events, was the strongest link to adult mental health struggles.
• The findings validate lived experiences and highlight the need for emotional as well as practical support.
• Support and healing are possible through resources like HDYO and HDSA’s NYA.

Learn More

Original research article, “Childhood trauma and psychological distress during adulthood in children from Huntington’s disease families: An exploratory retrospective analysis” (open access).