Juvenile Huntington’s disease (JHD) is rare. It is usually defined as someone having an onset before 21 years. A more accurate description would be juvenile-onset HD. The origins of this definition are obscure but the distinction has been recognized for many years. The proportions of JHD cases may vary in different parts of the world but a figure of approximately five per cent is useful. JHD is not a separate category but rather part of the spectrum. Whilst it is still useful to think about the needs of young people in terms of the different ways they can present to a doctor some of the limitations of the definition will be explored. As part of the process of developing new drugs the European Medicines Agency (EMA) would like information on how the drug affects children. The term JHD does not cover this accurately so new term, paediatric Huntington’s disease (PHD) has been devised so that young people under the age of 18 years and currently affected by HD can be identified.
Courage, compassion and communication: young people and Huntington's disease
