The odds of inheriting Huntington's from a parent with the disease is 50:50 - the same odds as flipping a coin.
When my mum was diagnosed the reality began to hit that I had a 50:50 chance of inheriting the gene and my brother was the same.
Kelly, from a small village near Leeds is one of the many people who has spent years with the knowledge of Huntington’s disease. In the back of her mind knowing that she and her brother have a 50% chance of inheriting it. Those 50:50 odds can be detrimental to someone's mental health due to the range of decisions that come with it. Testing and starting a family are two of the biggest decisions those living at risk have to make.
When I found out there was a chance we could inherit the gene, my feelings became more apparent I was starting to think about testing.
Kelly, has been with her husband Ben for five years. After they got married, she watched her granddad in the later stages of the disease and needing full-time care. She began to think about how this would impact not only her life but her husband's. Kelly said,
My dream has always been to live by the sea. With my mum passing away early, I started to think it was time to know what my future would hold. I wanted to make a plan for my husband in later life if I were to need full-time care.
While wanting to discover her options, Kelly was contacted a Specialist Adviser at the Huntington's Disease Association about genetic testing saying “they were very helpful and understanding”. This helped her make the decision to go through the testing process. “I had support from the Huntington’s charity and my family and the genetics counsellor which made my journey a very positive one”.
Kelly and her family have supported, and continue to support the Huntington’s Disease Association. The charity was very close to her mum, Susan’s heart so the family did an in-memory collection at her funeral raising almost £700. Kelly said, “We also received a beautiful wildflower heart from the charity which we planted on her stone so flowers could blossom”. Kelly will also be wearing her odd socks with pride this year to help raise awareness about the 50:50 odds that she and her brother have grown up with.
That's why events such as Odds And Socks Day are so important because they highlight the 50:50 risk of the disease which is such high odds that families like mine and so many other families have to live with and make the decision to find out the fate of our future.
Thank you to Kelly for sharing this story with us.
Want to get involved in Odds And Socks Day?
You can show your support by wearing your odd socks on Thursday 27 February and creating a fundraiser to help us raise awareness and valuable funds for people affected by Huntington's disease. If you sign up to fundraise with us you will receive a free pair of Huntington's Disease Association branded pink and green socks - this is subject to the first 150 people so act quickly fast if you want to get your hands (and feet) on a pair!
Want to make a day of it? Why not get your workplace, school or care home involved? We have ideas, activities, and decorations to help make your Odds And Socks Day event a success. Visit our fundraising page below to find out more.