Juvenile Huntington’s disease

Juvenile Huntington’s disease (JHD) occurs when a child or adolescent under the age of 20 years develops the symptoms of Huntington’s disease.  Juvenile Huntington’s disease is a rare form of the disease, with prevalence estimates placing it at approximately 5-10% of all cases.  In the majority of cases (but not all), the child with Juvenile Huntington’s disease has inherited the faulty gene from their father.

The symptoms of Juvenile Huntington’s disease also differ slightly to that of the adult form of Huntington’s disease

Juvenile Huntington’s disease is characterised by rigidity and leg stiffness, tremors and clumsiness. Involuntary movements whilst prominent in adults are less common in the juvenile cases.

Children also experience changes in their behaviour, personality and their cognition including learning difficulties.  A decline in their school/educational performance as well as changes in their mood (angry or frustrated) can be early signs of the disease. They may also experience seizures.  Seizures have not been associated with adult onset.

Currently there is no cure or effective treatment for Juvenile Huntington’s disease. JHD also tends to be more rapidly progressive than the adult form. Furthermore, it is not unusual for a child with JHD to have a parent who is also living with Huntington’s disease at the same. This places enormous stress on the family caring for both members. Although JHD can present slightly differently to Huntington’s Disease present in an adult, NDIS plans can assist by funding therapies, accommodation and equipment to support families in dealing with the impacts of Huntington’s Disease.