I’m from the Nottingham and am in my 30s. We found out we had Huntington’s in our family as one of my parents started developing symptoms, but previously there was no known history.
As there is a 50/50 chance of inheriting Huntington’s, I was tested in August 2014 and discovered that I too have the gene, but I hope to remain symptom free for some years yet.
Huntington’s disease is only part of my genetic make-up. I always say that if I didn’t have my genes exactly as they are, I wouldn’t be me. Huntington’s does not define who I am.
The HDA are always supportive when I contact them. Another massive support is my genetic counsellor at Nottingham University Hospital. She is happy to meet with me as much as or as little as I want and lets me drive our contact.
I have also been lucky enough to make some contacts through the HD support network. It’s like having a second family that are there whenever I may need them, as they know what I may be feeling.
As I learnt more about Huntington’s I wanted to do something positive in what was a negative situation. So I have done a couple of fundraising events for the HDA which have been successful in raising money, but equally important I have been able to raise awareness, as a lot of people don’t know much about HD.
I know it’s hard at times but you should try not to focus on the negatives. Try to turn them into positives. I am hopeful that a cure will be found as science is making some promising progress.
I’m taking part in a research project which involves a two day trip to London to the Huntington’s Disease Centre at University College London.
The first day will include an MRI scan for an hour, where they are looking at changes in the brain, and I will be asked to do a mental test while in the scanner. I’m also expected to do other tests or questionnaires that look at your emotions and other things. On the second day they will take some samples of my blood and spinal fluid.
I’m really looking forward to it. Anything that may help people with HD in the future is good with me.
It’s important to remember that each Huntington’s journey is individual.
You shouldn’t be driven by someone telling you your decision on a topic is wrong, it’s just their opinion. I personally feel it is good to be well informed and think there are lots of reliable sources of information that the HDA can recommend, but if you don’t want to know everything about the topic that’s your choice.
You should not let Huntington’s guide your life, it is only a part of it. So remember, it’s your journey, so do what suits you and your needs.