Hello, my name is Joy and I am a 27 year old school teacher living in Yorkshire, but I am originally from Cork, in Ireland, where I have lived for the majority of my life. I am currently at risk for Huntington’s disease and I have chosen not be tested at this time.
Huntington’s entered my life the summer of my 20th birthday. I had just finished my first year of Drama at university, I had a great job and life was pretty good. When I was 14 my Dad had a stroke but recovered quite well and even went back to his job as a postman until his retirement.
My Mom (a retired nurse manager) started to notice some subtle, unusual symptoms in my Dad in the years after the stroke. During this time my Dad’s first cousin in the UK received a diagnosis of Huntington’s. My Mom put two and two together and asked our GP could he get the test.
I remember at the time thinking that surely my Dad couldn’t have Huntington’s, the chances were so low. I remember talking about it with my mother and my older siblings (three sisters and two brothers) . Dad had other older siblings who were fit and healthy and his mother died in her 80’s of a stroke. It seemed very unlikely that Dad would test positive. The test was only a precaution as Dad (at this point in his mid 60s) didn’t display the usual Huntington’s symptoms.
I didn’t think about it much to be honest, I was too busy loving life and feeling grateful for my friends, family and my beloved nieces and nephews. My parents were retired, doted over their grandchildren and had bought a caravan and new car. They had major plans for the future entering the next exciting phase of their lives in their retirement.
I will never forget the day my sister picked me up in Cork City on a gorgeous sunny day and told me Dad tested positive for Huntington’s disease. I was shocked, upset and numb. I felt sick, confused and completely and utterly devastated. I became overwhelmed thinking about my father’s future. My Dad, my rock, the pillar of our family. I began to mourn the future I wasn’t sure that I would have, and then the worry began for my siblings, nieces and nephews and mother. I felt as though my amazing family were cursed and the worry was crippling, with little to no hope in sight. My boyfriend at the time was such an incredible support for me. I felt I couldn’t go to my family with my anxieties as I did not want to burden them, as we were all going through the same thing. This was a first for me, as I would always turn to my family for support.
That almost eight years ago. My father has deteriorated, but can still walk, eat, talk, hug his grandchildren. The disease did not progress in my father in the ‘usual’ way which was incredibly misleading. Two other families who live in our estate also are Huntington’s families, which leads me to believe it’s not as rare as what people think.
Initially when I researched Huntington’s I thought my Dad would be dead in a year or two. I also thought that by now I could be showing symptoms if I was positive. However, this was not the case, Dad is still here, and we are all living very busy lives. One of the websites that gave me real hope, as well as lots of information, was HDYO. I cried when I found it because it was so different to so much of the information on the web. It had information about testing, about late onset and Juvenile Huntington’s. It showed people living their lives and supporting each other. Reading the HDYO website and watching their videos changed my life and outlook, for the first time I felt hope. I began counselling and slowly started to find joy in life again!
The Huntington’s Disease Association of Ireland has been an incredible help to me and my family over the years. They provided me with free counselling sessions and have been instrumental in creating memories over the last few years. This included attending the HDYO European Youth Camp for a week in Kent. There I met young people from all over Europe who were in a similar situation to me. We attended outdoor activities events, discussion sessions, and met world leading scientists. And we laughed and we cried. This experience really helped build my confidence and I began to have hope for my future. In 2018, my Mom and I were also given the opportunity to travel to Rome with other families from Ireland and we met the pope in a worldwide Huntington’s disease event. After these experiences I certainly did not feel alone anymore, suddenly I had a wealth of people I could talk to and life started becoming a lot more optimistic.
Some of my closest friends have been a big support to me over the years. I know talking to some of my friends that they worried a lot about me, and I think they are equally a part of this story. One of my best friends, who completed her MA in Playwriting, wrote a play on Huntington’s for her dissertation, which was amazing! I feel like I have a strong community of friends and colleagues who support me.
I think about getting tested a lot, but often put it to the back of my mind. I am happy holding on to the hope that I have a 50% chance of not having it. Perhaps this will change if I want to have children in the future. Dating while being at risk can be complicated too. Should I tell him I’m at risk at the beginning? A few months in? For now, I am waiting for the right man to come around.
I had initially planned to do a video interview for this campaign but decided last minute against doing it. Mainly because of the fear of the internet and wider world knowing about my family history so publicly. This is difficult for me because I feel we need more awareness but we are all too afraid to talk about it. By talking about yourself, you as a result are talking about your family too and sharing information that they may want to keep private.
This has had a huge impact on my life. At times it is frustratingly sad and difficult and other times life is still so normal. My family is so close now and we are in absolute awe of my Dad who has faced Huntington’s like a warrior. My mother (his carer) has shown him so much love and they are both enjoying life to the fullest. We are all so supportive of each other and I tend to live life day by day. I enjoy precious memories with my family, and they are always face timing and calling me whilst I am here in the UK.
Who knows what the future holds but I will face it with optimism, grit, hope and joy! 🙂