By Teagan Cowton
Making The Decision To Get Tested
Our family found out in 2009 that our Mum was gene positive and quiet honestly, it frightened me. We had watched our grandfather go through this disease and now I have to witness it all over again.
My two older Brothers got tested almost immediately. With one about to become a father for the first time, it gave them the opportunity to plan their future and make the unknown, known. Luckily they were both gene negative. In 2014 my youngest brother found out he was also gene negative.
Then it was my turn. I did feel indirect pressure from my family to get tested but they knew it was something I would do when I was ready. I honestly wasn’t sure when or if I would ever be ready.
In 2014 I had the opportunity to attend the Huntington’s Disease conference in Perth. Over two days I listened to amazing people all working towards the same goal – effective treatments and support for HD sufferers and carers. I learnt about current and upcoming studies, the latest findings of research and what is available in terms of support and treatments. What I found to be the most beneficial was there are changes pre-symptomatic people can apply to their lifestyle now and how it would benefit them in many years. I listened to people speak about how diet, environmental enrichment and supplements, all have a positive impact in the lives of not only symptomatic, but also pre-symptomatic people. This information was what I had been waiting for. It gave me hope, self-assurance and confidence that it was OK to get tested.
In January 2015, I sat in my genic counsellor’s office with my fiancé beside me and listened to her read out ‘there IS an expansion of the gene’. And there it was - gene positive. Deep down I knew of this result but I was hoping, praying for a miracle that it wouldn’t be so. I honestly believed that it was not possible for all children to be gene negative but it was so incredibly disheartening that this disease was set to continue for another generation.
I remember sitting in the chair, crying in the arms of my partner, apologising and just so unsure. I asked my counsellor, ‘What now?’ I knew exactly what it meant for me later in life but I had no idea of what I do now or what came next. What do I do? How do I tell my family? It was a lot to process.
A few days had passed before I could tell my family. They didn’t even know I was getting tested. How could I just say ‘Surprise... I got tested and it’s positive!’ I had scheduled an appointment with my counsellor a couple of days after learning of my result so I thought I had better tell my family so I have something to talk about. One by one, I phoned my Parents, Brothers, Grandmother and Aunties. I couldn’t tell any of them without breaking down. They shared my disappointment in the result but were all so wonderful in ensuring my future would be supported and they would do whatever they could to help.
It’s now almost twelve months on and I have made those changes to my lifestyle. I ensure I exercise regularly, have a clean diet, limit my alcohol intake, take supplements and ensure I am surrounded by a positive energy and really embrace being mindful. I ensure I do whatever I can to help raise the profile of HD. I am currently participating the latest HERO’s study, have an Instagram account dedicated to raising awareness and soon I will be starting a blog to share my experiences and thoughts about my journey.
Knowledge is power. We need to equip ourselves with the latest information, trials and studies to reassure us that everything will be OK. We really are living in a time of hope where science and research are miles ahead of where I ever thought it could go. Surround yourself with people who support you and make connections. I have gained so much strength from reaching out to HWA and meeting people who are also participating in the HERO’s study.
Check out Teagan's fantastic Instagram profile for her great content about keeping happy and healthy.
If you have a story that you'd like to share with the community, anonymously or otherwise, please contact firstname.lastname@example.org
Remember to like us on Facebook for more.