If you have Huntington’s or Juvenile Huntington’s disease, it means you have a faulty version of the gene responsible for producing a protein that helps nerve cells (neurons) in certain parts of the brain to develop before birth.

The faulty version of the gene produces too many repeats of a particular piece of genetic code. This means that the protein it produces damages your neurons instead of helping them to develop, causing them to function poorly and reduce in number over time. As this happens, changes occur in how the neurons function, resulting in the various symptoms of Juvenile Huntington’s.

In the case of Juvenile Huntington’s, the gene produces an even larger number of repeats than with adult Huntington’s, with the result that symptoms start to appear earlier (before the age of 20).

The parts of the brain affected include the areas called the basal ganglia and cerebral cortex. These inter-connected areas are associated with different types of activity including movement, learning, thinking, planning, motivation and emotion.

Changes you may experience in your body:

• You may start to lose weight, even though you have a good appetite. This may be due to a combination of factors, including difficulties with chewing and swallowing, and the increased energy used by the body due to involuntary movements. A referral to a dietician or a speech therapist can help with issues related to eating and swallowing (see Juvenile Huntington’s - getting the care you need).
• You may experience changes in your muscles. They may become more rigid over time, resulting in a slowing down of your movements. Physiotherapy can be very helpful to ease stiffness and maintain movement for as long as possible.

The ways that Juvenile Huntington’s affects the body and the speed at which these changes happen are different for different people. Not everyone experiences the same symptoms, and they change over time as the disease progresses. However changes to the body tend to occur faster in younger people.

Having care that fits your needs and adapts to changes you experience will make a huge difference. Many people also find it helpful to connect with other young people living with Juvenile Huntington’s.

Getting the right information and support is vital and we’re here to help.