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Huntington's more common than thought

30th June 2010

Medical experts have warned that the brain condition Huntington’s Disease (HD) is at least twice as common as was previously thought.

The genetically inherited condition currently affects at least 6,700 people in England and Wales but researchers writing in the Lancet say stigma means families disguise the condition, or deaths are mis-recorded.

The condition affects muscle co-ordination, leads to cognitive decline and there is no cure.

However, specialists point out that various treatments can help improve the symptoms.

People with the mutant gene will develop HD and their offspring have a 50% chance of inheriting it.

Writing in The Lancet, National Institute of Health and Clinical Excellence (NICE) chairman Professor Sir Michael Rawlins says there needs to be greater understanding and awareness of HD.

He has taken up the cause of HD in his capacity as an honorary professor with the London School of Hygiene and Tropical Medicine and MPs and peers are launching an All Party Parliamentary Group devoted to HD.

Prof Rawlins said: "The Huntington's Disease Association currently cares for 6,702 people in England and Wales with symptoms. Specialist neurologists have referred all of them, so their diagnoses can hardly be in doubt. From these numbers alone, the minimum prevalence in England and Wales must therefore be at least 12.4 per 100,000.”

Professor Rawlins also criticised insurance companies for penalising those at risk.

A genetic test for HD was identified in the early 1990s - but many people with a family history prefer not to know if they are carriers.

 

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