Regional care advisory service, the Huntington's Disease Association

Huntington's disease is a degenerative illness of the central nervous system.  It ultimately leaves sufferers with dementia and virtually unable to move.

Paula swimming with dolphins in Florida

Symptoms usually begin between the ages of 30 and 50, although they can begin at any time from childhood (Juvenile HD) to old age.  Juvenile HD is a very rare condition and is the diagnosis given to anyone who develops symptoms of HD before they are 20 yrs old.

Paula Fisher's symptoms started when she was just a teenager.

"She'd always had problems with her speech," says her mum, Christine.  "Then her school told me that she couldn't manage P.E lessons, she kept falling off the gym equipment." 

Paula's dad had Huntington's disease and it was always at the back of Christine's mind that her daughter could have the juvenile and more aggressive form of the disease.  Test confirmed her suspicions when Paula was 16.

Paula's now 24 and she can't speak at all, although her mum can still understand much of what she tries to say.  She has to use a wheelchair, swallowing has become difficult and she's starting having fits.

The life expectancy of someone like Paula, once they've been diagnosed, is 10-15 years.

"She came home one day, when she was 15, and said, 'I've got the same thing as my dad, haven't I?'Christine, mum to Paula, who has Juvenile Huntington's disease

Proceeds from Jeans for Genes Day 2008 will go towards funding a Regional Care Advisor for Merseyside and Cheshire.  The advisor will support individuals and their families, and is key in co-ordinating a range of services.  These can include dietitians, community and mental health services and therapies such as physiotherapy and speech therapy.

The service will improve the quality of life for those affected by HD in the region and will help to promote awareness of the condition.