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Emma’s Story

My journey with Huntington’s Disease began at a very young age (albeit there was no actual diagnosis at this time). My Grandad was known in the family as ‘the one who jigged & couldn’t sit still’ we had no idea he was suffering from HD, the doctors originally thought he had late-onset Parkinson’s but he was diagnosed with HD in 2010 & later passed in 2012. At this stage I was only in my late teens and didn’t really understand the seriousness of the condition, it was then in 2014 that my Dad’s colleagues had noticed his behaviour change at work, and they asked him to be tested for HD.. unfortunately my Dad had inherited the faulty gene and was already displaying symptoms of this untreatable disease. Shortly after he could no longer work, he had to give up driving when he was refused petrol at a petrol station because they thought he was drunk - he wasn’t - it was his symptoms getting worse. Living in a remote area in Cornwall in a caravan was proving difficult to keep his independence. We decided in 2015 that Dad should join myself & my brother in Wiltshire. I managed to sort his housing out and he moved in to warden-controlled sheltered accommodation in the summer of 2015. Once I was spending more time with my Dad it made me understand the seriousness of this condition and made me come to terms with the fact that I had a 50/50 chance of inheriting this disease from him, so in September 2015 I booked an appointment to see my GP to be referred for genetic testing. I underwent genetic counselling to make sure I could deal with the potential diagnosis and then in April 2016 I went to the hospital for my neurological test and blood test. Once they draw blood they have a legal obligation to tell you the results so it was not possible for me to change my mind during the waiting period. The next two weeks were the longest of my life! On results day I went back up to the hospital with my Mum where I was told that I had NOT inherited the faulty gene from my Dad. My Mum cried relief, I just sat smiling. I was so relieved I hadn’t inherited this disease, but that doesn’t mean I don’t have to deal with it. I’m the closest family member to my Dad, so I have taken on the role as carer and power of attorney, it’s stressful and puts a lot of pressure on me and my relationships. I go through times of struggle, where I feel like it’s almost a depression.. I don’t want to do anything, see anyone, talk to anyone.. it’s so difficult to explain to people how it effects me. I’ve lost friendships due to this illness because people just don’t understand that I withdraw sometimes because there’s so much to deal with emotionally, I’ve been called a stranger by some of my closest friends. That wasn’t intentional, it’s because I’m trying to live my life as well as organise things for Dad and I find it extremely difficult to talk about my feelings so a lot of people probably don’t realise it affects me in this way.

Dad fixates on things, so if he’s got something on his mind NOTHING else in the world matters and I can wake up to 15-20 text messages which lack coherence because he’s unable to type a full sentence these days, I then HAVE to go round to his house and make sure he’s okay, I drop everything. Just incase there was something wrong, I couldn’t forgive myself if I ignored it. Dad refuses care from professionals as in his eyes he’s absolutely fine, but I’m slowly bringing him round to the idea of Meals on Wheels as he doesn’t cook for himself anymore. The typical life span of someone after diagnosis is 10-20 years, Dads only 6 years in and it’s scary to witness how much he’s changed, our roles have reversed - I look after him now.

I’m 2017, my brother & I did a sponsored sky dive and between us we raised just over £2000 for the Huntington’s Disease Association, it was an amazing experience and a memory that we’ll always have together, very apt after his unfortunate diagnosis in 2016. Unfortunately, as this disease is genetic and we have a 50/50 chance of inheritance my brother was diagnosed later in 2016 and has started to develop cognitive symptoms already. He struggles with his memory, and he has terrible mood swings. I hope that treatment becomes available soon to help him.

I got engaged in 2018, and we were going to wait a while before getting married so we could save more money, however, we decided to get married in 2020 (Covid-dependent) just so Dad doesn’t deteriorate too much and he can still walk me down the aisle. I know that means just as much to him as it does to me. My fiancé is amazing with my Dad, and my Dad loves him. I’m so grateful for all of his help and that he’s stuck with me throughout all of this - he even stood by me through all my testing, we met the same month I went to the GP to be referred and I had given him an ‘out’ if I had tested positive. Fortunately that didn’t happen.

My Mum is an angel and has been my support through all of this (as well as my fiancé), she helps as much as she possibly can whether that’s to give me advice as what to do for Dad, or be an ear to vent to when it all gets too much, or a shoulder to cry on and I will be forever grateful to her for that.

It’s horrible to know this disease is currently incurable with no treatment, let’s raise as much awareness as possible so hopefully one day this will change! Thank you so much for reading ❤️

Emma xx

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