Charities - Huntington's Disease - HDA

Huntington's Disease, or HD, is a rare hereditary neurodegenerative disease that kills brain cells, impairing a sufferer's ability to walk, talk, think and reason. The disease has been likened to having Alzeheimer's, Parkinson's Disease and Schizophrenia all at the same time. Currently there is no cure for HD and anyone that has the relevant mutated gene will develop the illness. Death is usually through a secondary illness.

Huntington's Disease typically develops between the ages of 30 and 50, but it can start at any age, including infancy. Symptoms begin with memory loss and confusion, changes in personality and mood that may include aggressive and antisocial behaviour, as well as clumsiness or uncontrolled muscle movements and rigidity. As the condition progresses, other symptoms of dementia appear, such as loss of rational thought and poor concentration. Involuntary movements, difficulties with speaking and swallowing, weight loss, seizures, depression and anxiety may also occur.

Medication can be used to alleviate the psychological and physical symptoms. However, many sufferers have little or no insight into their illness which makes living with the disease extremely stressful for both the sufferer and their carers and families.

The chances of inheriting the mutated HD gene from a carrying parent are 50:50. Hence, given HD's relative late onset and its rarity (c5,000 sufferers in the UK), multiple generations of families can be affected before it is even understood that a risk of inheritance exists.

Our Experiences

My father was diagnosed with Huntington's Disease in 2003.

Since then, he has experienced many of the numerous and varied symptoms of HD as his health has deteriorated.

I tested negative for the mutated HD related gene in 2004.

The Huntington's Disease Association - HDA

The Huntington's Disease Association (HDA) exists to support people affected by the disease and to provide information and advice to professionals whose task it is to support Huntington's Disease families. The HDA is financed through the generosity of trusts, foundations, the statutory and corporate sectors, branches of the HDA, members and friends.

Research into finding the cure for HD is also ongoing and it is hoped that the recent significant advances in stem cell and genetics will result in a break-through in the next 5-10 years. The HDA contributes significantly to the funding of such research.

Make a Donation

It is easy to make a donation to my chosen charities. Please either donate on-line through Just Giving, or send me a cheque payable to "Jo Oliver Charity Account" at;-

E52 Montevetro, 100 Battersea Church Road, London SW11 3YL

All contributions are greatly appreciated.