HD can take a hike
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Hi, my name is Tanya and I'm trying to raise awareness and fundraising for a cause very close to my heart - Huntington's Disease Association.
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Tanya’s story
Where to begin? I guess I should start by telling you about Huntington’s disease (HD), the illness that took my Grandad Farry, Auntie Noreen and, most recently, my Auntie Catherine. You see Huntington’s disease has been a prominent and unwanted guest in my family. So, when the opportunity to raise money for the Huntington’s Disease Association, a charity that supports people like my family, I jumped at the chance.
I've seen the devastation that HD causes and I am continuing to see it in other loved ones who are battling the symptoms. What makes it even harder to cope with on an individual level is that you’re potentially seeing your own future. It’s a genetic condition, so any child that has a parent with Huntington’s disease has a 50/50 chance of inheriting it. The journalist Charles Sabrine has described HD as being a combination of Alzheimer’s, Parkinson’s, schizophrenia and cancer all rolled into one.
My dad was tested for Huntington’s disease a few years ago. He was diagnosed with the defective gene, however, I’m pleased to say he’s very well! It’s difficult to come to terms with the news that your parent has such a terrible disease. It’s a battle of emotions: you’re upset for what their future may hold but equally thinking, what does this mean for me? Should I get the test? How would I cope with knowing that I might get ill one day and who knows when? Will I spend the rest of my days having a perfectly normal twitch and worrying if this is the onset of symptoms? In the summer of 2015, for many personal reasons, I decided to go ahead and get the predictive test. I contemplated this for a good while. The turning point was when I heard the quote, ‘fear can hold your prisoner, hope can set you free’. I didn’t want to be a prisoner of constant worry, which takes me to August 2015 and a medical waiting room, where I waited anxiously for my results.
That time was a complete blur. I just remember looking to my partner Lewis, with tears in my eyes as Alison, my counsellor, told us that my CAG count was 42. This meant that the gene was faulty and the prediction was that I would go on to develop the symptoms of Huntington’s disease. I remember fumbling for a box of chocolates I’d brought for Alison in my bag as a thank you for her support during the testing process before leaving St. Mary’s – all I could think was, oh my god, why did I do this and how do I tell my family? I can only describe it as devastating. The news, the implications, what it meant for my siblings, my parents, for Lewis, our future, my career. It was so overwhelming and just so sad.
