Rosie is one of eight cousins who are all at risk of Huntington's disease.

Rosie's family, like many others, discovered that many members of the family were at risk of Huntington's disease long after they had children. Rosie's dad and two of his siblings tested positive which meant that eight children were at risk.

When did you first find out about Huntington’s disease?

"I am 26 years old, and currently work as a Midwife for the NHS. I first found out about Huntington’s disease when I started secondary school and we were learning about hereditary diseases. There it was written in the biology textbook. I strangely recognised it and knew it was the disease my gran had passed away from. After this biology lesson I realised this meant that my dad had a 50% chance of also having it. However, I didn't ask many questions nor even think much about it right then."
"It wasn't until a while later when we had gone camping just the four of us, and we were sitting out one night chatting, and my Mum and Dad broached the subject of Gran having Huntington's. It meant that he was at risk and he explained that he tested positive, which I was quick to brush off with an 'I know, and I know it's hereditary we learnt about it in school'. I'd overheard them talking about it before and had put two and two together, but again never asked any questions. We had a long chat that night and I think Mum and Dad must have felt relieved almost that it was out in the open now. They told us that night and have always promised we will not need to worry about Huntington's as there would be a treatment in time for us if we were also to test positive. Strangely, I never felt worried about it, I don't know why I felt like that but I did."

Who in your family is currently affected by Huntington’s disease?

"My gran had four children, three of which tested positive for Huntington's disease, and one negative. My dad, Auntie Sandy and Uncle Pete are gene-positive and my Uncle Dave is negative. The onset of symptoms in my family fortunately seems to appear after around 50 years old. My uncle and Auntie have been experiencing symptoms for a couple of years and my dad has recently started to have early signs, but he is very lucky to be on one of the Huntington's trial drugs which aims to lower the Huntingtin protein."

Who in your family is at risk of the disease? 

"All of my cousins are at risk. Myself and my sister were all already here before our parents found out they were positive for Huntington's. So that left eight of us at risk of inheriting the gene. When there is so many of us at risk I think that whatever the result, it is hard to deal with because we know when one gets an answer there is always the next person that is going to find out. You either deal with knowing you have the gene and are eventually going to develop symptoms or you live knowing it's going to slowly start to affect all of your family."

When you first found that all the children were at risk, how did this make you feel and how did your family cope with it?

"Since all of us have gradually found out about each of our parent's individual tests, Huntington's disease slowly became not such a taboo topic. It took a while to get where we are now but we all try to be open about it and this has only brought us closer together as a family. It is definitely a strange feeling to come to terms with, as you hope no one will inherit this awful disease but the reality is we all have a 50% chance. My cousins all have different views on having the genetic test, some of us have had the test, some are looking into it and others are not worried about finding out right yet. But we know we are all here to support each other whatever decisions we make."

What do you wish other people knew about Huntington’s?

"I think it's important for people to be aware of Huntington's disease, the symptoms, the changes the person with Huntington's experiences and the impact it can have on families. But also how something like this makes your family so strong and resilient. It can bring you so much closer together, to support each other and yes talking about it can make it seem much more real and daunting but it can also help you process it with people who understand and are going through the same scary feelings."
It's a huge aspect of our lives, but it's what gives us the drive and motivation to fundraise, to push ourselves and to live every moment we have.

Thank you to Rosie for sharing this story with us.

Huntington's Disease Awareness Month - In The Family

This year's awareness month campaign we are sharing the stories of families affected by Huntingotn's disease and asking them what they wish others knew about the disease. We are then asking the general public to take five minutes to learn some of the facts about Huntington's disease.

Find out more