Ruth Rigby

Ruth Rigby’s mother, Sheila, died from Huntington’s disease (HD) a disease passed down through families via a faulty gene. HD causes particular functions in affected areas of the brain to deteriorate rapidly, reducing the ability to walk, talk, think and communicate. Ruth has inherited the HD gene, and will develop Huntington’s herself. Ruth’s family, husband Mick and six-year old son Harrison, take part in research at the Institute of Neurology. Here she tells their story.

My mother had Huntington’s Disease (HD), but was unfortunately not diagnosed until after she’d died because she had never displayed some of the obvious physical symptoms associated with HD.

As her only child I could see that there was something different with her from around the age of 45, but nobody within the medical profession realised that there was anything serious going on. It was a really disturbing and upsetting time.

We sought medical advice over the years but we didn’t get any kind of diagnosis. So it came as a dreadful shock to find out Mum had died of Huntington’s, and also to then be told there were implications for us as a family too - there was a 50/50 chance that I had inherited the HD gene, and there were ramifications for our son Harrison 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.

Mick was incredibly strong and supportive but we both agree that getting involved from an early stage in the research at the Institute of Neurology, Queen Square has really helped us cope and given us hope because we know we are doing something constructive and useful.

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.

The key motivation is to try to protect the children of gene carriers particularly because Huntington’s manifests itself often after you’ve had your children. At the moment there are swathes of people who simply aren’t aware of their situation. 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.

I don’t want what happened to Mum happening to Harrison. He is 6 now, too young to be tested for the gene, and doesn’t fully understand what’s going on. His granny died when he was 2 ½, and we’ve talked about why. We want him to grow up understanding HD rather than it being something that suddenly hits him.

The current prognosis is not great if you are a HD gene-carrier. My great hope is that by the time Harrison is tested he doesn’t have to worry about the future, even if he has the HD gene. I hope that research will have advanced so much that medicines will be available when he’s older and it will be a manageable disease rather than a killer disease. If we could do that, that would be amazing.

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 to 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.

I’ve realised there’s plenty of time for slowing down when I’m actually ill so let’s make the most of life now

 

Ruth Rigby with her son Harrison, husband Mick and mum Sheila.

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