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The Citizen, 2000-05-10, Page 32PAGE 32. THE CITIZEN, WEDNESDAY, MAY 10, 2000. Huntington, a ticking time bomb for afflicted By Janice Becker Citizen staff It can be like a ticking time bomb, just waiting to inflict its damage. The question is, would one want to know if the bomb was there? That is how it was for Christie Kilgore of Goderich and her family, when after many years of the unknown, they were told their moth­ er had been a long-sufferer of Huntington disease. The little known disease usually strikes between the ages of 35 and 45 and 50 per cent of the children of suffers will also be afflicted by the ailment. For Kilgore, the youngest of nine children, she remembers her mother living with Huntington for 30 years, one of the longest known survivor. Of those years, almost 25 were spent with her mother unable to speak, to communicate any information about what the disease was doing to her. Until 1993, the diagnosis of Huntington was purely based on symptoms and speculation as there was no definitive test. Even then, the family had a diffi­ cult time believing it really was Huntington. There was little or no information available on the disease and there was no history in the fami­ ly which would account for it. It was in 1996 when Kilgore’s sis­ ter was finally diagnosed with the same ailment. Though she had shown the same symptoms as her mother, her difficulties were attrib­ uted to other things. When the physi­ cian learned the family history test­ ing was done. When observing someone suffer­ ing from Huntington, Kilgore says the most common perception is that the person is drunk. The gait becomes very awkward. Speech' can become slurred and there is a clum­ siness. Another form of Huntington caus­ es a flailing, though smooth arm motion so that the person looks like they could be dancing. With one diagnosis in the family, Kilgore decided she also had to know as she has children. “I needed to know if I was a carrier so they could be prepared.” Unlike some diseases, Huntington is not just carried. If the gene muta­ tion is present, the person will expe­ rience symptoms, the severity is the only wild card. When she decided to go through the testing process, her ordeal was recorded by a documentary crew from Northern Lights and can be acquired at local libraries. The name of the video is Deadly Inheritance. Fortunately, Kilgore was not a car­ rier. “Not knowing was the worst part,” Q: Po you have a personal investment plan? A: For a balanced portfolio, include: 1. Physical activity 2. Healthy eating 3. Your doctor’s advice www.participacfion.com she says. “If I had it, I don’t know what I would have done. I wouldn’t want to be in a state like my mother, but when faced with reality....” Since her testing, Kilgore has become involved with the Huntington Society as a regional ‘I needed to know if I was a carrier’ — Kilgore representative. She has also learned more about the disease which has stricken her family. Related to Parkinson’s and Alzheimer’s, Huntington disease affects the motor functions. It has been discovered that a protein of a specific gene is affected. The chain becomes overgrown, showing more than 30 repetitions of the sequence of information rather than the normal 21-28 repetitions. The number of repetitions can indicate the severity of the affliction. The brains cells are eventually killed by the overgrowth as the nucleus is squeezed. Kilgore says the worst part of the disease is that it is a very slow process, normally taking 10 to 15 years before the sufferer succumbs and they are cognitive throughout. Death is often due to choking because there is no control swallow­ ing. The disease is hereditary and those with a concern should learn about their family history, she says. Kilgore say her mother had tremendous care, which helped her survive the 30 years. New drugs are currently being tested which hold the progression of the disease at its cur­ Brussels Lions Club 29th Anniversary ELIMINATION DRAW Saturday, May 27, 2000 At B.M. & G. Community Centre 25 prizes totalling $6500.00. Every ticket to be drawn Only 500 tickets at $45.00 each The last ticket drawn being worth - $4,000.00 Entertainment - A tribute to Allan Jackson & the Backstreet Boys DRAW COMMENCES AT 5:30 PM Held under the authority of a Special Occasion Permit Lottery License #M01529 Proceeds for Community Betterment A Night You Will Not Want To Miss! rent state for a period of time. Kilgore’s commitment to the soci­ ety extends beyond assisting families with questions about the disease. She gives talks on the subject, organizes fundraisers and seeks donations. The second go-kart fundraiser race will be held at Kincardine’s Family Fun Land the first weekend in September. It is two hours of fun, she says. A national fundraising campaign offers an open ticket for a flight any­ where in the world to the person who raises the most monies. The amaryllis campaign runs in October. Anyone wishing information on Huntington disease or wanting to participate in the fundraisers can contact Christie Kilgore at 519-524- 5853. TICKET ADMITS 2 PEOPLE & ANY FAMILY MEMBER UNDER 12 Tickets are going fast. For ticket availability Call 887-6856 or 887-9488 Business Directory DTH Satellite Systems Stove filake Owner/Technician WARM UPTIGROVE. llp P.O. 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