FAMILIES hit by the tragedy of a horrendous disease are being offered a lifeline with support from people who have lived through it.

Huntington’s Disease is an incurable hereditary disease which attacks the brain and nervous system sometimes over many years causing terrible problems for sufferers ranging from involuntary body movements, to losing the ability to swallow and eat.

The North Yorkshire branch of the Huntington’s Disease Association is calling on people who are affected, particularly in rural and isolated areas to join them and help set up support groups around the county for help and advice.

Hairdresser Carrie-Anne Wise of Kirklington, Bedale, whose aunt and grandfather both died from the disease held a 25 hour sponsored hairathon to raise awareness about Huntington’s, making nearly £5,000 for research and support.

Her aunt Valerie Sharp from Bedale died at the age of 53 after suffering for ten years.

“I was astonished at the lack of knowledge, it is quite rare but it is a heart wrenching and terrible disease,” said Mrs Wise.

“Aunt Valerie managed amazingly well, and was such a jolly lovely woman, but 18 months before her death she went into a care home and what really surprised me was the number of people who had not treated anyone with the disease, nor had one of the GP’s, and when we went to register her death staff there had not encountered it.”

“But there is help, setting up these support groups is crucial, I think they can really make a difference for families who are living with the disease.”

Secretary of the North Yorkshire group Penelope Worsley, from Hovingham, near Helmsley, lost her husband Oliver to the disease in 2010, fourteen years after he was diagnosed. Her two eldest children Georgina and David were also diagnosed with Huntington’s, and other family members are at risk.

She said:”It’s hard for them because it’s a progressive, degenerative condition which will affect their lives. It affects how you live and deal with things.”

The group is working with special Huntington’s advisor Lee Martin. He said:” There is actually lots of help and support, it's just getting the word out, especially to families living in rural areas. The groups will offer time out and support for people who suffer with Huntington’s and their carers and families.”

A meeting is being held at Minster Grange Nursing Home at 2pm on March 26, contact Mrs Worsley on 07973221362 or penelopeworsley@gmail.com or Mr Lee on 01757 282281