But getting to that moment was one of the most difficult, gut-wrenching and soul searching journey’s I’ve ever been on. This is my story, my reasons, my doubts, my fears and most importantly, my decision.

For those of you who don’t know, Huntington’s Disease (or HD) is a neurodegenerative disease caused by a mutated, or faulty, gene that can be inherited, with every offspring of someone with the disease having a 50/50 chance of inheriting the faulty gene that causes the disease. HD in its simplest terms is a mix of Alzheimer’s, Parkinson’s and Motor Neurone Disease – it’s actually a lot more complicated and multifaceted in practice. It’s a rare disease with around 8,000 known people in the UK diagnosed with it. 

Back in 1993 a genetic test became much more widely available to anyone who wanted to know if they had inherited HD. It’s a predictive test, using a sample of blood, which tells you whether you’ve inherited the faulty gene and if you have, potentially how severe the symptoms will be and whether you’ll start showing symptoms early in life or later. It’s not compulsory to take the test if you know HD is in your family, it’s absolutely a decision you make if and only if you want to know. 

We found out Huntington’s Disease was in our family in early 2019 (in fact, the day before the hubster’s birthday). It was when I realised that I already watched an ancestor pass away from the disease and I knew what would be in store for me if I had inherited the disease. A hard, slow decline into full-time care, unable to talk, move or feed myself. Going through genetic testing is not a decision you take lightly. 

But I knew that I had to take the test. Ultimately for my own peace of mind. 

Throughout the genetic testing process you are fully supported by Genetic Counsellors (or at least should be) and I can’t praise them enough. They explained the process, told me that it wasn’t a decision to take lightly nor too soon after finding out about the disease. They listened to me without judgement, asked the hard questions and, because I was so adamant on taking the test, asked what if I didn’t, what then? I knew I had to consider that option, discussed it with the hubster but I always came back round to: I just need to know. I couldn’t live in limbo. But most importantly, through genetic counselling I knew that there is always the option to withdraw from the genetic test, to not know the results, even once the blood has been taken.

You might not know this, but I’m also somewhat of a hypochondriac! And simply, I did not want to live the rest of my life thinking that any new cough or cold was the onset of HD. Especially after the beginning of the year, having had successive chest infections over 6 months, that would for sure have made me spiral into thinking it was the onset of symptoms. Plus, one of the first symptoms that I saw in family members was an inability to swallow food with ease. When I get super stressed or anxious, I have moments where I’m unable to swallow food easily. That said, it’s completely different to the difficulties associated with HD. 

There are also personality changes that come part and parcel of Huntington’s Disease. I’d seen family members go from being happy and ok to downright arsey and practically abusive in a millisecond. Rude, angry, aggressive and full of blame and hatred. Half an hour, they’d be back to their normal self as if nothing had happened. And that isn’t even as bad as others have it, I’ve known people to become physically violent when these personality changes kick in. I pride myself on being fairly calm, yes I get anxious but I’m not an angry person, I don’t lash out, I don’t pick fights and I do not like confrontation. So knowing that these changes might be round the corner for me, just did my head in. I wanted to be forewarned so that I could be fore-armed. 

I knew that if I had the faulty gene the hubster and I were in for a rough ride. I’d heard of marriages crumbling under the weight of the disease, partnerships over because one of them didn’t want to see the other succumb to this disease. I even said to the hubster one morning before he left for work (and plenty of other times too) that I wouldn’t blame him if he wanted to leave me once it was confirmed I had the gene. It’s when I knew for sure I’d married the right person, because no matter what I said, he stood firm beside me.  

Because I was convinced I would have the faulty gene. I was too similar to family members who had the disease, shared too many interests and felt that I was similar in build, health and choices. It wasn’t a case of ‘if’ I test positive for the gene but ‘when’. 

And because I was so convinced that I’d have the gene, I went through testing. Just so that I knew what to expect and generally when to expect and so that I could put into place all the things that I would need to be able to live with the symptoms as they came about. I wanted to tackle it head on. Plus, I also reckoned that I’d get onto every research trial possible so that if there is a cure, I’d be potentially one of the first to receive it.  

It was, also, my vow if by some miracle I came out negative. 

Before we went in, I kept warning the hubster that I would sob and cry no matter the outcome. Postive? I’d be in bits. Negative? Also, I’ll be a sobbing mess. So, when we went in for the appointment on 23rd July, the Genetic Counsellor (before we’d even got to the door) said “Good news”, almost skipping on the spot as she said it. Because of my conviction, my brain went to the middle ground possibility – that I’d inherited the faulty gene, but I might be one of the “lucky” ones who don’t necessarily show symptoms.  

Nope.   

I don’t have the mutated gene at all. 

That day I had no reaction. The tears and relief that I was expecting still haven’t really come. 

6 months later it hit me more when another family member also tested negative for the faulty gene. I got the call at work, and I broke down. The realisation that it had ended with our generation was overwhelming. And even now, as I’m writing this tears are coming to my eyes, I’m letting them flow, because whatever the universe has planned for me, it was kind enough to release me from that torment.  

But it doesn’t end there. There is no relief really for those who test negative unless no other family members have it. Ok, we don’t live with the threat of this disease hitting us. HD is still within my family. We still have to deal with the intricacies of the disease, the care, the symptoms on a daily basis. And we still need to find a cure.  

So here I am trying to honour my vow to do anything I can for the HD community because I don’t want you to have to go through this alone. In 2027 I’m hoping to launch a CIC to dedicate more yoga and mindfulness to anyone affected by Huntington’s Disease. So, if you’re affected by the disease in any capacity and want to learn how yoga and mindfulness can help, get in touch or if you want to explore yoga that is adaptable for all whether you can get up off the floor or not head over to the Fat Frog Family. 

And before I conclude, I want to end with a bit of a caveat. Me telling my story is just that, telling you my experience. I’m not advocating either way to take the predictive test. It is a decision for you to make, and it is yours alone to make. It’s an incredibly difficult decision to make and really not one to take lightly. I had to do a lot of soul searching and the result is what I’ve told you. You have to know that you are prepared for whatever the outcome and there are so many variations of a theme to consider. I am and have always been incredibly self-aware, so this was completely the right course of action for me. It may not be for you, and that is absolutely valid, fine and right for you. But don’t do this alone, any part of it. Talk to family, friends and professionals, who can all listen to you and help you make sense of what’s going on, the pros and cons etc. And if you choose to take the test, brilliant. If you choose to “live at risk”, brilliant also. Your life, your decision and anyone in their right minds will respect that. If you’re struggling with a result or with knowing whether to take the predictive test, I feel you. If you want or need help, I can probably signpost you and if not, I know people who can.