HD is quite a difficult illness to understand therefore SHAYP staff are happy to speak with you and explain what HD is. However, if you would like to find out more please look at www.hdyo.org which provides age appropriate information. HDYO is a trusted source of material- please be wary that other websites on the internet may not have factually correct information.
Huntington’s disease (HD) is a hereditary illness which means it is passed through families. It is a neurological condition and is part of a group of diseases which affect the brain and central nervous system. In HD specific brain cells stop working properly and then die. This causes three types of symptoms which affect how muscles work, how the person processes thoughts and information and it also affects mental health.
In HD the person may develops jerky involuntary movements. They will also have less control over their movements. As the illness progresses the person can develop problems with swallowing, and communication such as slowed or slurred speech.
In HD the person will experience changes to the way they take in, process and remember information. HD isn’t like Alzheimer’s disease and the person who has HD knows who they are, where they are and who other people are. However the person’s thinking becomes slowed down. Decision making becomes more difficult. Some people with HD become less able to make appropriate judgement about every day situations. Most people with HD experience problems with planning, organising, concentration and switching their attention from one thing to another.
Many people with HD experience problems with their mental health. Depression and anxiety are the most common difficulties and are often a reaction to the challenges caused by living with the illness. A very small number of people with HD may have more serious mental health problems.
There are some other symptoms which include weight loss, problems with sleep and difficulty regulating body temperature which also relate to changes in the person’s brain and are more common as the illness progresses. HD is a long-term illness and usually brings about very gradual changes over a period of fifteen to twenty five years.
Huntington’s disease is passed through families and a child who has a parent with the illness has a fifty percent chance of inheriting the gene that causes the disease. A test is available to anyone, over eighteen years of age and involves several meetings with a genetic counselor, before having a blood test.
There is presently no cure for HD, but worldwide research is giving hope for the future. There is however a great deal that can be done to improve and manage symptoms, ensure that families living with the illness get the support they need and enable them to enjoy a high quality of life.