One of the first people in Scotland to take part in a new trial for Huntington’s disease says the programme, which is led by a scientist in Aberdeen, has taken him from a “real place of darkness”.
Sandy Patience is among only 801 people globally taking part in the Roche Generation-HD1 study.
The research, led by Zosia Miedzybrodzka at the University of Aberdeen, aims to find out if a new gene-blocking compound can slow progression of the inherited disease.
The disease is usually fatal around 20 years after it becomes obvious, with no effective treatment to halt or slow its progression.
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Sandy, originally from Avoch in the Highlands, was diagnosed with the condition two years ago.
The 57-year-old said: “Huntington’s disease has had a massive effect on all my family.
“Everyone I have ever loved has been affected by this illness.”
The trial drug is an antisense oligonucleotide (ASO).
Sandy said: “I’m hoping against hope that I am on the trial drug, but even if I’m on the placebo, the trial has had a very positive effect on my life.
“From a real place of darkness I am now able to focus on the good.
“I could write a book about the illness and its effects but right now I’m too busy living.”
For further information on HD visit the Scottish Government backed National Care Framework for Huntington’s Disease, which provides families and health and social care staff with everything they need to know about the condition all in one place: care.hdscotland.org