A slow killer disease with potential to devastate families

Charity is hoping to raise awareness of condition for which there is no cure

Imagine inheriting a condition which causes progressive physical and mental degeneration and for which there is no cure.

This is the reality of Huntington’s disease (HD), a genetic disorder which causes changes to muscle control, thinking processes and can lead to longterm mental health issues.

Prevalence of HD has increased threefold in the last 20 years as scientists are better able to collect information about the numbers of people with the condition.

There are around 1,100 men, women and children in Scotland living with it but as many as 5,000 could be potentially at risk.

Scottish Huntington’s Association (SHA) is the only charity north of the border dedicated to helping people affected by the neurological condition.

John Eden, chief executive of SHA, explains that each child of someone diagnosed with HD is at 50% risk of developing it themselves.

The disease is caused by a mutation in either of an individual’s two copies of a gene called Huntingtin.

“The average age of onset is between 33 and 45 but there is a juvenile form of the disease which can begin at any age,” John says.

There is no cure for HD and those living with the condition will require 24- hour care as it progresses into its later stages.

“There is a ‘ripple effect’ across families, with partners becoming carers over many years – 80% of children will also become carers,” says John.

So why isn’t HD as well known as conditions like cancer and dementia?

“It’s a combination of the stigma that surrounds the condition, the fact that it is relatively rare and, unlike motor neurone disease, there are no highprofile individuals who live with the condition. The folk singer Woody Guthrie is probably the best-known person to have been affected by HD. He died of the disease in 1969,” John explains.

The SHA is hopeful that care for patients will improve the consistency of treatment and support. In the meantime, the charity is always looking for fundraisers and volunteers.

To find out more, visit www. hdscotland.org

There is a ‘ripple’ effect across families

Huntington’s Disease is a neurological condition which can spread through families.