Ruth's story

With her mother only diagnosed with Huntington’s disease (HD) after her passing, Ruth was concerned that she and her family may also have the gene that causes this devastating condition.

With a young family, Ruth sought medical advice to see if she was a carrier of the gene. She said, ‘Knowing that there was a 50/50 chance that I inherited the gene, I was very concerned due to the ramifications for my son as well’.

‘The tests I had showed that I did indeed have the HD gene. I felt like I was in this hideous black hole: someone had just told me something awful about my future and to begin with, I lost all hope.

My husband was incredibly supportive and by getting involved with research at the Institute of Neurology, it helped us cope and give us some hope. At the moment, the brain research involves me lying completely still in an MRI machine for an hour. It’s hideous! But I’m lucky that I can do that because there will come a time when I no longer can.’

Ruth moved onto say she hopes that the research carried out on her will help protect the children of gene carriers and help people like herself, who did not know they had Huntington’s until later in life. ‘The more we do for research the more we can protect our children from the future and hopefully stop the disease from being handed down.’

Ruth - Huntington's disease

‘My son is too young to be tested for the gene. He knows his granny died from Huntington’s disease and we are trying to educate him on HD rather than it being something sudden that hits him. I hope that research will have advanced so that medicines will be available when my son is older and he will not have to worry if he has the HD gene.

There’s never a day when Huntington’s is not on your mind, but there are some days when it’s more on your mind than others. Anything that goes wrong you start to attribute it to the disease, so if I forgot something, or trip up, is that the first sign of onset? My favourite management technique is distraction - keeping busy and trying not to think about it. There’s plenty of time for slowing down when I’m actually ill so let’s make the most of life now!’

Brain Research Trust funds research into Huntington’s disease and other neurological conditions to accelerate the progress of brain research. To find out more, click here.