“. Retired railway signalman Sandy Patience, 65, was among only nine people in Scotland and 801 people globally with the degenerative condition who took part in the two year Roche Generation-HD1 study in 2019. New research has found northern Scotland has one of the highest rates of Huntington’s disease in the world at 14.
5 per 100,000 people, more than five times the estimated worldwide rate of 2.71 per 100,000 people. There is currently no available treatment for Huntington’s – but it’s hoped trial drugs, such as antisense oligonucleotide (ASO) and pridopidine, could slow its progression and lead to a better quality of life.
Sandy, who lives in Inverness, was diagnosed with the condition in 2017. He told STV News: “It’s such a big thing for people to not put off anymore. It’s not a death sentence.
Look at me, I’m sitting here. “It’s incredible, the strength I must have had. “It was always something on my backburner.
I was too busy living my family life.” The number of people living in northern Scotland who have the gene that causes Huntington’s disease has been accurately counted for the first time in 35 years following research by the University of Aberdeen. Huntington’s disease is an inherited condition that stops parts of the brain working properly over time.
The disease leads to increasing memory difficulties, psychiatric problems and twitchy movements that the person cannot control and is usually fatal around 20 years after it becomes obvio.
