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Send us your story
You have the opportunity to share your experiences of living with Huntingtons Disease with all visitors to the website. You may also wish to email photos. If so please attach them to your email as jpegs. e-mail us at sha-admin@hdscotland.org |
Sarah's Story
Sarah Winkless, Olympic Bronze Medalist Rowing Champion and HD gene carrier. |
Counting the days to school holidays, fighting with my brother and Sunday afternoon walks with Mum, Dad and the dog are all fond memories of my childhood. I remember happy times and my family was much like most of my friend’s. Then, in my early teens, there was a change in Mum. Her behaviour became strange and erratic; she was prone to mood swings and seemed to lose the natural grace of her movements. At the time we put it down to post-natal depression after the birth of her fourth child, my sister Imogen. Unfortunately as time passed, the symptoms, rather than passing, worsened. It became clear that something more sinister was happening to her. This was my introduction to Huntington’s disease. It had no name and no explanation. All we could do was look on and try to be supportive.
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Mum had no wish to see a doctor and the only thing we could do was to investigate homeopathy and improve her diet. It wasn’t until about ten years later, when she was finally persuaded to have some testing, that she was positively diagnosed and I really began to understand what was happening to her. With Mum’s diagnosis I, and my other brothers and sister realised that we were also at risk of having the gene which leads to Huntington’s. I chose to investigate my situation and some six months later in the spring of 1997 I discovered I too, was positive.
Sport always has been a huge part of my life and on August 21st 2004 I won an Olympic bronze medal for Great Britain in the double sculls. Olympic medals are not won overnight and many years of training went into my performance on that day. It was an incredible feeling to have achieved something that had been a dream for so long, and receiving my medal was one of the proudest moments of my life. Mum was in the crowd, proudly watching from her wheelchair, and to be able to put my laurel wreath on her head and my medal around her neck meant a great deal to me. The way she has dealt with Huntington’s has taught me so much. Her character and sense of humour shine through even though she finds it difficult to express herself. She is an incredible woman, the way she has done as much as she can, for as long as she can, is a constant inspiration. She has fought the disease every step of the way and, although perhaps sometimes in my sub-conscious, I know the strength she gives me.
We have been incredibly fortunate, if anything the family has been strengthened my Mums’ illness. We make certain that she is included in everything the family does, no matter how awkward her heavy wheelchair can be, or the strange looks we get from people who don’t understand. I can’t pretend that I don’t sometimes look at Mum and wonder if how she is now is what the future holds for me. What I do know is that as, when, if I am affected by the disease, those around me will be better equipped physically and emotionally to deal with it than I was with Mum, thanks to the work of organisations such as the Scottish Huntington’s Association (SHA). |
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| Questions? Please Ask! |
Use our exciting confidential and easy to use ASK! facility to obtain answers to your questions. |
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The drop down menu contains details of some of the most frequently asked questions made by people affected by Huntingtons Disease. |
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The Scottish Huntingtons Association is a registered company and charity in Scotland (Company No. 121496, Charity No. SCO 10985). Our registered office is:
Suite 135, St James Business Centre,
Linwood Road, Paisley. PA3 3AT,
Tel; 0141 848 0308,
email: sha-admin@hdscotland.org.uk

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