Cardiff University researchers are part of a global consortium who have published the first clinical guidance for the management of Huntington’s disease through physiotherapy.
It follows more than a decade of ground-breaking collaborative research led by the Cardiff team into how to manage the devastating and life-limiting neurodegenerative condition.
There is no treatment to halt or reverse Huntington’s, which damages nerve cells in the brain affecting movement, memory and behaviour and affects 6-13 people in every 100,000.
This means physiotherapy is one of the few routes to offer a better quality of life for those with the inherited disease.
A joint review by researchers at Cardiff, Columbia, Ohio State and Wayne State universities looked at previous research in this area, analysing data from 26 separate studies.
The review found physiotherapy was critical to improve motor impairments, such as dystonia or chorea (uncontrollable movements), rigidity, gait or balance issues in people with the disease.
And in a study, published in the journal Neurology, the researchers outline the first global evidence-based guidelines, welcomed by clinicians, physiotherapists and patients.
Professor Monica Busse, of Cardiff University’s Huntington’s Disease Centre, said: “The impact of Huntington’s disease is devastating, in large part because of the increasing social isolation and loss of independence that comes with walking difficulties and mobility problems.
“People with Huntington’s need physiotherapy to help them cope with their changing physical function – but tell us that they struggle to get expert input within the health service and there has been little to date to guide physical management in practice.
“These recommendations have the potential to really help those living with Huntington’s to keep mobile – and ultimately to keep them interacting in daily life.”