Research reaches ‘knife edge’ in quest for  HD treatment

One of the world’s leading researchers into the degenerative neurological condition Huntington’s disease (HD) said research into treatments for the condition was now on a ‘knife edge’.

Dr Ed Wild, consultant neurologist at University College London, told the Scottish Huntington’s Association (SHA) annual conference in Glasgow that he believed they were now within touching distance of finding an effective way of slowing down the disease.

Dr Wild outlined how several particularly promising drug programmes were now moving into advanced stages.

‘In my career working with HD I’ve never been more excited,’ he said.

‘Not only is research into effective treatment making real progress, but the way the condition is perceived has changed beyond all recognition. When I first started working with HD patients it was very much a disease hidden away, people did not want to talk about it. Now people are signing up for worldwide clinical trials and openly sharing their stories to increase understanding. It really is beginning to step out of the shadows.’

The latest drugs in development aim to reduce production of the faulty protein created by the genetic change that causes HD. The treatment aims to allow the brain to repair damaged cells; it is hoped this will have the effect of slowing down the rate that symptoms develop.

The SHA is the only charity in the country that supports families living with the condition through a team of HD specialists; a dedicated youth support team and a financial wellbeing service.

HD is a complex neurological condition with symptoms that typically begin to develop between the ages of 30 and 50. It causes three main groups of symptoms: changes to thinking processes – a type of early onset dementia, loss of muscle control and involuntary movements which lead to loss of speech and swallow along with mental illness. Those impacted by HD may eventually lose the ability to walk, talk, eat, drink, make decisions and will require  24-hour care. It is also hereditary with each child of those diagnosed at 50% risk developing the disease. There is no cure.

It is estimated there are around 1100 people living with HD in Scotland and between 4000-6000 potentially at risk.

‘HD is often called the most curable incurable disease, because unlike other neurological conditions, such as Alzheimer’s, we know exactly what causes it, we just didn’t know how to treat it, I strongly believe we are now moving in the right direction,’ added Dr Wild.