Ellis' story

I'm 19 years of age, originally from Northumberland, but currently study accountancy and finance at the University of Lincoln. I've witnessed the effects of Huntington’s disease since before I can remember, with it affecting my grandma, then learning my dad had inherited the gene and I also had a 50/50 risk. I took the genetic test and discovered in September 2016 that I had also inherited the gene. 

I became involved with the HDA after seeing my dad and grandad raising money for the HDA and wanted to be a part of giving something back for their incredible work, and help other families like ours. So in September 2014 I ran my first Great North Run to raise funds for the HDA.


I have always had a positive attitude towards the disease and its impacts. During the genetic testing process, I received genetic counselling, both before and after my result. The support from the Centre for Life in Newcastle was amazing. Straight after I found out, the HDA called me asking me if I needed any support, or to speak to an adviser, but I felt strong enough to deal with it in my own way. The Centre for Life has been there for my family ever since the gene was discovered and we owe them the world, alongside the HDA.

Do what’s right for you

If you are thinking about taking the genetic test, my advice would be to do what is best for you. At 18 I made the decision that I couldn't cope with the unknown anymore, it was torture every single day. There were so many people with so many different opinions, often with the belief that I shouldn't be tested so young and I should live my life, but I couldn't. Although I tested positive for the gene, getting an answer removed the dark cloud over me and, in a weird way, I felt free. But there are others who don't want to know and wouldn't have that same feeling. Put yourself first and make the decision for yourself.