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Huntington's disease more common than previously thought

5 July 2010
Appeared in BioNews 565

The number of people in the UK suffering with Huntington’s disease (HD) may be double what was thought and that patients are failing to be diagnosed due to the stigma attached to the illness, according to two papers published in the Lancet.

The papers were by Alice Wexler, an historian from the UCLA Center for the Study of Women in Los Angeles, and Sir Michael Rawlins, honorary professor at the London School of Hygiene and Tropical Medicine.

The first article was a review of the social and scientific attitudes towards Huntington’s, which assessed a range of historical evidence over the last century. The second article looked at the evidence for the number of people with Huntington’s in the UK, and argued that the prevalence is far higher than has been estimated.

The two articles demonstrate that there is a stigma attached to HD, and that the ease of genetic testing has meant that insurance companies often penalise individuals if they fail to disclose their HD status on applications. New statistical analysis has found that approximately 6,700 people diagnosed with the disease are currently being cared for by the Huntington’s Disease Association, meaning the minimum prevalence is at least 12.4 per 100,000 which is double the original estimation. Sir Michael Rawlin believes that stigma is the main reason why people fail to get tested when they know they are at risk.

The articles coincide with the launch of an All-Party Parliamentary Group on Huntington’s, which seeks to highlight the need for better support services for families and greater funding for scientific research.

HD is a degenerative neurological disorder, which is inherited in an autosomal dominant nature (this means a child only needs to receive one copy of the faulty Huntington gene from one parent). Symptoms often present by middle age and include loss of muscle coordination and cognitive decline. There is currently no cure available but, due to its well-established genetic basis, there are genetic tests available to people who have a parent with the disease and want to know if they have inherited the condition.

Fear of insurance penalties keeps Huntington's sufferers in the shadows
The Guardian |  30 June 2010
Huntington's cases underestimated
Lutterworth Mail |  1 July 2010
Huntington's disease is twice as common as thought as stigma stops sufferers seeking help
Daily Mail |  1 July 2010
Huntington's disease: not as rare as we thought
PHG Foundation |  30 June 2010
Huntington's disease out of the closet?
The Lancet |  30 June 2010
'Real need' for Huntington's research
BBC Radio 4 |  30 June 2010
Stigma, history, and Huntington's disease
The Lancet |  3 July 2010
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4 May 2010 - by Dr Vivienne Raper 
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7 September 2009 - by Ailsa Stevens 
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