I found out about Huntington's Disease in 2014, when I was 21. The day before my birthday. I knew something was up with Mum. For a couple of years her movement was a bit disjointed, and she slurred some of her words. It just seemed like the connection between her body and mind was a […]
So excited to connect across the world. Tracey is sending us this all the way from America! Here is her story: 30,000 people in America currently have Huntington’s Disease. That number seems somewhat large on its own, but when you consider the number of people living in America, 325.7 million, that 30,000 makes up only […]
My name is Sarah. My Dad has HD and his Mum also had HD. I was about 10 years old when my Nanny died from HD. At that time we knew very little about it, but I clearly remember talking with Carol Dutton and being adamant that I wanted the test to see if I […]
Kelly is my big sister. She runs her own business and contributes £1 of all her sales to UCL, who pioneer the latest research into treatments for HD. The full blog to this along with others can be found at: www.thebeesknees.co At the age of 18, I was given the devastating news my Mum suffered […]
John, 70. HD+. I tested positive for HD in 2011. I have three surviving sisters; my brother was sadly HD+, and his son was affected by Juvenile HD. 2 of my 3 children (all adults), had tested gene positive for HD. I was divorced from their mother and remarried. Me and my wife had a […]
We found out HD was in our family a few years ago when my Mum’s brother was unwell with what we first thought was severe depression. My Mum’s parents had known it was in the family but decided not to tell anyone, however it was on my great Grandad’s death certificate. My uncle got tested […]
One thing about genetic testing that is important or everyone to know is that it is a totally personal, unique journey for everyone. Please know this is just my view on things and everyone’s will be different I am sure. I had so many opinions put onto me during the years I hadn’t tested for […]
We were told about Huntington’s Disease when I was 14. My sister was 18 and was due to go to Lancaster University, a good few hours away from home. We were told at this time as Mum has started to show symptoms and I was picking up on them. They didn’t want my sister to […]
“Hear My Voice”: a message to all Health Care Professionals involved with assessing Huntington’s Disease. Written from an imagined perspective of my beautiful Mum Jenny, who is my absolute hero. My eyes may not focus, My face may not smile, My brain hasn’t talked to my muscles for a while. I may not say exactly […]
Disclaimer: this is quite long and will take a good ten minutes of your life to read! I hope it doesn’t upset or offend anyone it’s only my views and experiences. When you hear someone is grieving, you may automatically assume that they are bereaved. But many people will be grieving through the entire process […]
