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HiDden No More

A Huntington’s Disease (HD) All Party Parliamentary Group, chaired by former President of the British Medical Association and leading UK Neurologist, Lord Walton, will be launched in the House of Commons today.

The initiative has gained widespread cross-party support from a further 40 members of Parliament. The launch will be marked by the ‘Huntington’s Community’ under the banner “HiDden no more” with a photo-opportunity including the patrons and supporters of the Huntington’s Disease Association.

Sir Michael Rawlins, the Chairman of the National Institute for Clinical Excellence (NICE), will reveal the statistics for the prevalence of HD in the UK to show that the Government has massively underestimated the prevalence of HD in the UK population. There are more than twice as many people who are showing symptoms of HD as previously thought (in excess of 12.4 per 100,000).

In addition to the launch of the HD All Party Parliamentary Group, today will see the publication of a number of related articles in The Lancet that will address the increased incidence of HD, and also the stigma associated with developing such a disorder. According to Sir Michael,

“The stigma (of having HD) has had a deleterious effect on studies that have sought to investigate its epidemiology and...the true prevalence is unquestionably greater than this.”

HD is a progressive, inherited, neurodegenerative disorder characterised by movement abnormalities, cognitive impairments and emotional disturbance. There is no cure for this fatal disorder. Within a family, multiple generations are affected and ‘unaffected’ family members have to watch as HD wreaks a horrible destruction of both the mind and body of their loved ones. The challenges to everyone involved, whether they have the disease or not, cannot be underestimated.

The impacts of the new findings are far reaching. Since HD is caused by a dominant mutation that can be present in either of an individual's copy of the huntingtin gene, any child of an affected parent has a 50% risk of inheriting the disease. The increased prevalence of HD means that there are many more people at risk of HD in the UK than previously thought. Thus today’s acknowledgement by the UK government is important  not only for increasing public awareness of the disease, but also for providing support to individuals and their families, and in promoting research.

Here in Cambridge, there are a number of major efforts underway to understand the causes of HD and to develop treatments for the disease. Professor Jenny Morton runs a multi-disciplinary laboratory at the Department of Pharmacology studying the behavioural mechanisms underlying HD in animal models (mouse and sheep). Jenny Morton said of the initiative

“The news that HD is much more common than previously thought is dismaying. I hope that this announcement will herald a new era for research into HD. Treatment for HD is currently limited. It is only with a better understanding of neurodegenerative diseases that realistic treatments for them will emerge”.

 Cambridge Neuroscientist Professor David Rubinsztein, pictured left, (Department of Medical Genetics) is interested in pathological changes in HD and the genetic pathways that modify the disease. Dr Roger Barker, pictured right, is a consultant neurologist at the Brain Repair Centre. His group study the clinical aspects of HD; he also runs the HD Clinic at Addenbrooke's Hospital which is an important component of the European HD Network.  In fact, there are more than 200 people who have listed HD as a research theme and more than 50 researchers directly studying the disease according to theCambridge Neuroscience database.

For further information, please see the following:

Huntington's Disease Association

HiDen no more!

European Huntington's Disease Network

The Lancet

Article written by Cambridge Neuroscientist Dr Dervila Glynn (pictured right).

Posted on 30/06/2010

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