In 2013, Kate found out that her mum had Huntington’s Disease. In 2014, at the age of 23, she tested positive for the disease as well. Here are the Five Things she’s learnt in the last five years:
By Kate Key, who tested gene positive for Huntington’s Disease at the age of 23
1. There's still time
At first it feels like you've just been handed a death sentence but what I came to realise was that I had something not a lot of people had, and that was a reason to make the most of the time that I had while I was healthy. To do the things I wanted to do. To live the life I wanted.
Kate with her mum and son
2. It gets easier and then harder
And then easier and harder again. When I first found out it was hard to imagine a world where it wasn't the first thing I thought of. But over time, it did get better - I became less sensitive and was able to talk about it, I even decided to share my story with the world. But there are days when I see my Mum, and it's a little (or big) reminder of what the future holds for me. It's a never ending rollercoaster of emotions, some days are just better than others.
3. Nothing can prepare you for it
Coming up to the testing, I was pretty 50/50 - I didn't feel strongly that I had it, or that I didn't. But nothing could've prepared me for the words "I'm sorry Kate, but your results have come back as gene positive." It was this big "what if," and then it wasn't. It was a "when". I was having to factor my gene status into every decision we made. I can't get insurance. I couldn't just "have a baby". Every discussion about our future has this underlying heaviness to it, even when we try and pretend that Huntington's Disease isn't a thing.
4. It's harder to see my Mum
To start off with, when I saw Mum I never really thought about putting myself in her shoes. My main focus has always been her happiness. I'm not symptomatic yet so why would I worry about myself. Not only have I watched my mother deteriorate before my very eyes, I've also had to come to terms with the fact that one day, that will be me.
5. I've learned to be more open
Mum was always in denial when it came to Huntington's Disease, so when she became symptomatic, she shut all her friends out and had to go through her decline mostly by herself. I understand why she did it, in fact when I think of my future it's quite appealing to hide away. But I realised that I didn't want to be like that. I wanted people to know. For my friends to understand. To be there for me, with me, throughout it all. And that's why I came out in public about it. Because if I didn't, I'm just adding to the stigma that it's something to be embarrassed and ashamed about. It's not. It's horrific and awful and I dread the day that my symptoms begin. But knowing that I have a whole village out there to support me, makes the burden a little easier to bear.
Kate with her mum
What is Huntington’s Disease?
Huntington’s Disease (or HD) is often likened to having Alzheimer's, ALS and Parkinson's all at once. Rigidity of muscles, involuntary jerking of muscles, muscular contractures, problems with balance and gait stability, gait impairment, abnormal eye movement and difficulty with speech and swallowing are all symptoms of the disease. It is also genetic, with children of parents affected having a 50% chance of inheriting HD. Symptoms often start between the ages of 35-45, and once they begin, people with the disease are given an estimated lifespan of 10-20 years.
About Kate Key
Kate is a wife, mum and graphic designer based in Auckland, New Zealand. When she's not trying to entertain her son, keep the house tidy, squeeze in an hour of work here and there and spending time with her family, she's raising awareness for Huntington's Disease. In 2012, Kate found out that the changes in her mum were due to Huntington's Disease. In 2013, Kate also tested gene-positive for HD. Since then, she's been trying to not let it define her and is making the most of the life she has, regardless of her circumstances. You can follow Kate on Instagram and read more about her on her website.
