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Huntington’s Disease and how it has had a positive impact on my life.

Updated: Feb 26

How Huntington’s has changed my life for the good,

People tend to think Huntington’s Is a negative thing, and yes it is, it is a horrendous disease that takes the life of many, its working its way through my father at the minute.

Huntington’s doesn’t always have to be negative, the point of #imnotdrunk is to show a positive message and I feel like I have lost sight of this due to difficult times in my family.

Here are five reasons Huntington’s has changed my life for the better. (I never thought I’d type that sentence 5 years ago)

  1. Being one of the youngest board members of Huntington’s Association Northern Ireland. As I am from Northern Ireland, I have been involved in HDANI for many years, from around the age of 16. I started by raising money for the charity and attending the yearly conference for support. I hope now I can give support to the members, and help them through difficult times as so many helped me in years before. Three years ago at conference I put my hand up to join the board, it was the scariest thing I have done and I do not regret it. It was hard to adjust to as a 20 year old sitting on a board in over whelming but I stood up to the challenge and believe I have learnt a lot and brought a lot to the table. Any one affected by Huntington’s or any other disease or condition I urge you to reach out to your local charity and get involved, if you have time to spare volunteer or step up to their board or just attend events and support groups to gain help and advice you may not realise you need.

  2. Public speaking- I have always been a dramatic person, my mum and boyfriend will agree with that. Public speaking is something I am passionate about and enjoy! In September 2016 I was asking by HDANI to speak at their medical training event about what it is like to be a young carer and care for someone with Huntington’s. The day after this event I was also speaking with some friends at the Huntington’s annual conference about a recent trip we took to England. ( Check out the blog for both these events, Medical training day and Euro camp) If I could do more public speaking events about what it is like to be a carer and the struggles I face both looking after my father and being at risk then I would welcome them with open arms! I hope the future brings more events like this for me.

  3. Family and Friends- I have many so many friends both in person and on social media, through events I have attended and organised I have been able to meet so many amazing people. Huntington’s disease has given me a passion to speak out and break the stigma around the disease; because of this I have met so many people. Some of these people I call best friends, yes I’m talking about Chloe, Amy and Rosin you girls have helped me through so much and pushed me to go that extra mile! I have met some of the most amazing adults in the Huntington’s field such as Dr Ed Wild, Charles Sabine and Matt Ellison. These people have done more for Huntington’s I could ever dream of! They each approach different fields and excel in them all! Even though I have lost many family members because of their lack of empathy and ignorance, but I have also gained a lot of support from family and friends, everything I do and accomplish they are supportive and even when it doesn’t work out the best they still pick me up and help me move onto the next challenge. When I personally need support or help when dealing with issues happening in my life they are always there for me. Pulling me out of dark times and showing me the light and strength to continue.

  4. Personal growth- I have thrown myself into Huntington’s for several years now, I have grown as a person in many aspects. Dealing with doctors and social workers on a regular basis means I can’t act like a typical teenager (back when I was a teenager) I need to be mature and understanding, listen to what they’re saying and choose my battles. I had to grow up quickly and get over stuff quickly, when friends were going out drinking I wasn’t, when friends were doing fun things during the day I wasn’t. Dad came first and that was it, if he needed me I went. Scheduling him into your daily tasks and ensuring he was looked after. I’d say my brother and I spoil him! We gave up certain things but in return we got something more, we got time with our father and knowing we have done everything we can or could. No one will take that away from us! At the age of 23 I can say I have done a huge amount more that most 23 years old and this put a smile on my face!

  5. My education is something I struggled with, at the age of 23 I should be graduated and working in a job or my field. Instead I am on my third year of my degree and one of the oldest in my class. Having failed my GCSE’s (High school) and repeating them the year after, this delayed my A-levels, with the confusion on my coursework for my A-Levels; I ended up repeating my final year of those. During my A-levels I decided I wanted a career in the British Army, but due to Huntington’s my medical wouldn’t pass, they would request a test. This then set me back another year, taking a year out as I missed the university applications; I was then 21 when starting my degree. I don’t see this as a bad thing, I am mature and have experience, I didn’t waste any of the time I spent building myself up, organising events and getting involved in as much as possible this then gave me a glowing CV which has improved with my time at university. When I was deciding what I wanted to study at university, I applied for four medical based degrees, as my A-Levels were Medical Science. So how did I end up studying leisure and events management? The time I spent organist events and meeting people it made me realise I enjoyed working with people and planning events, which then lead to my wild card in my UCAS application for this degree which I had more than enough credits to get into having been offered an unconditional offer. Choose an education which you enjoy, something that makes you want to get up in the mooring. Call me a huge super nerd but I actually enjoy attending my lectures, marketing, accounting, HR and event planning modules are interesting to me. I hope one day I will be in a management position within a company or owning my own.

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