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| Below is an article I submitted to local media in the hope of publication. |
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| Huntington’s Disease Awareness Week 16th – 22nd June 2008 Many people won’t know much about Huntington’s Disease. Even more won’t realise how much activity is based in Sidcup to provide support for sufferers and their families and to raise awareness and funds. Sue Wright, a resident living in The Hollies, is the owner of The Huntington’s Disease Support Club – an internet based resource with over 730 members worldwide. Her husband John and his sister Angela both inherited Huntington’s Disease from their father and passed away in 2006 and 2007 respectively having suffered the full ravages of the disease. John was a teacher in the London Borough of Bexley from the time he qualified until the disease forced him to retire at only 41 years old. |
| Sue and John the day after his 56th birthday, his last birthday |
| The Huntington’s Disease Support Club Logo |
| Sue and John opted not to have children since the disease has an autosomal dominant pattern of inheritance, meaning that each child of an affected parent has a 50% chance of inheriting the mutated gene that causes the disease. Every person with the mutated gene will develop the disease unless they die from other causes before the onset of symptoms. Angela and her husband had two children, both now in their 20s and at risk. Since the discovery of the gene that causes Huntington’s Disease in 1993, those at risk have had the option to be tested. However, there is as yet no treatment or cure, so less than 20% of those at risk decide to be tested. Huntington’s Disease robs its victims of all their abilities over a period of years, leaving them unable to walk, talk or eat and totally dependent on others for their care. It affects both males and females and symptoms can begin at any age from infancy to old age. The disease impacts the whole family and is so devastating that many commit suicide rather than face the inevitable suffering. The suicide rate in families with Huntington’s Disease is at least seven times higher than average. It is a socially isolating disease making sympathetic support crucial, especially as few in the medical profession will have experience since it is rare, affecting about 1 in 10,000 people in most western countries. Sue’s club offers members the ability to post messages and attend regular scheduled club chats three times each week. She is assisted by Kelly Hendrix in Maryland USA, who lost her daughter Angela to juvenile Huntington’s Disease last year. |
| Angela Hendrix, a victim of juvenile Huntington’s Disease |
| The bonds that form between people who may never meet in person are unbelievably strong and Sue finds it a privilege to be able to help so many from the comfort of her own home. She has also been to America, Italy, Denmark and the Isle of Man to meet club members, and attended the 2005 World Congress in Manchester as well as conventions in America and England, the latter organised by The Huntington’s Disease Association. |
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Sue with Rich Bonsignore and Nancy Wexler at the 2005 World Congress. Nancy’s work in Venezuela led to the discovery of the Huntington’s Disease gene. |
| The Huntington’s Disease Association, which moved from London to Liverpool on 2nd June, exists to support people affected by the disease and to provide information and advice to professionals whose task it is to support Huntington's Disease families. The HDA is financed through the generosity of trusts, foundations, the statutory and corporate sectors, branches of the HDA, members and friends. The association liaises with self help groups including the North Kent Support Group which meets in Sidcup on the second Thursday of each month. Many individuals take on amazing challenges to raise funds for Huntington’s Disease. One such individual is Matthew Ellison in Coventry, a member of Sue’s club. He has recently chosen to be tested at the age of 19 since his father has HD, and now has to come to terms with the knowledge that he also has HD with no way of predicting when his symptoms will start. He is going to ride a bicycle from Land’s End to John O’Groats later this month, an event he has been planning and training for with incredible determination. He is dedicating the ride to recent victims of Huntington’s Disease and will be riding Sue’s late husband’s bike as a tribute to him. He has already raised £1,365 for the HDA and $1,760 for the HDSA. Please help him raise his target of 2,500 for each and help towards finding a cure and helping families already living with Huntington’s Disease. |
| Matthew Ellison and his father John |
| Web sites relating to this article:
The Huntington’s Disease Support Club: www.thehdsc.org The Huntington’s Disease Association: www.hda.org.uk Matthew Ellison’s Huntington’s Disease Awareness site: www.hdawareness.org Huntington’s Disease Society Of America (HDSA): http://www.hdsa.org |
| Want to see more? Come back soon or visit The Huntington's Disease Support Club |
| © Sue Wright 2004 -2012 |