Early stages of Juvenile Huntington’s: what to expect

Changes in behaviour or a drop in school performance are often the first noticeable symptoms of Juvenile Huntington’s disease.

  • It may become harder to concentrate, learn new things, follow instructions and remember things.
  • It may take you longer to respond to questions and perform tasks.
  • It might be harder to start things, even things that you can do once you get going. Sometimes this can be misinterpreted as lethargy or laziness.
  • You may start to feel more frustrated, impatient, irritable or angry than normal.
  • You may start to experience stiffness in your limbs. Your movements may slow down and you might find that you start to stumble or walk unevenly.

These are just a few of the possible symptoms - you may not experience them all or you may experience different ones. It is usually the case that the earlier the onset of symptoms, the more rapid they are likely to progress.

Many symptoms can be greatly helped with extra support at home and in class. As Juvenile Huntington’s is so rare, it’s important for parents and carers to work with a child’s school to help them understand the disease and how best to support you. For example, it may be that you need longer to eat or to have frequent snacks throughout the day to keep your weight up.

Living with Huntington’s disease can be very difficult for you if you have it and for your family. The right support can make a big difference, and we’re here to help.