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The Citizen, 2004-05-13, Page 18Advocate Christie Kilgore is the area representative for the Huntington Society. With May being Huntington Awareness Month she is working to educate and inform the public about this devastating genetic disease. (Bonnie Gropp photo) Love Mommy, Daddy, Cassie, Mikayla & Ally 3tap,p,v 1 at ..7Cieta Nenkft an May. 11 The Brubachers of Ethel Neatautant and 2afietv REAL Home-cooked meals! Come and try our cinnamon buns. Mon. - Fri. 7:00 am 'til 6:30 pm; Sat. 8:00 am - 6:30 pm; Sun. Closed Closed Saturday, June 5 for a family wedding 4 887-8659 in Ethel Check out the classifieds \t/ CRUISE SALE ONE WEEK Sale PRINCESS May 15-22 Sale valid on select departures to ALASKA • CARIBBEAN • SOUTH AMERICA CANADA/ NEW ENGLAND • EUROPE HAWAII • MEXICAN RIVIERA & MORE... Askus about the "Captain Circle Referral Program" rea #2392471 Carlson Wagonlit Ellison Travel Exeter 235-2000 or 1-800-265-7022 Goderich 524-8692 or 1-877-847-1272 • open Saturdays and evenings by appointment www.ettravel.com email: vacations@ettravel.com PAGE 18. THE CITIZEN, THURSDAY, MAY 13, 2004. Woman strives to educate public about Huntington By Bonnie Gropp Citizen editor Often the things one might choose to change about their genetic make- up if they could are pretty inconse- quential. But for people with Huntington Disease (HD) that genetic inheri- tance spells a death sentence. May is Huntington Awareness Month. HD is a rare hereditary dis- ease which statistically affects one in every 10,000 families. It is caused by a defective tAG protein that kills brain cells. Christie Kilgore, the area-repre- sentative for the Huntington Society, explains that there are four com- pounds from which proteins are made. When there is a defect there is either a deletion or increase. In the case of HD it's an increase that results in the protein essentially wrapping itself around the cell until the cell eventually dies. The symptoms, said Kilgore, are similar to Amyotrophic Lateral Sclerosis (Lou Gehrig's disease), Parkinson's or Alzheimer's. "It affects mind and body. One of the key things is that people often think someone with HD is drunk; They have a funny gait, their speech is slurred." • While people are born with the ill- ness, they don't generally see the effects until the age of 35-40. If a child inherits the gene, they then have a 50-50 chance of passing it on to their children. "It!s a devastating disease," said Kilgore. "Any illness is, but with HD after they diagnosis you have 10-20 years left, but you've had a full life up until then. There is, therefore, a great deal of controversy regarding people's choice to have children." Kilgore herself has tested negative for HD. A brother and sister have not been so fortunate, which is why she has taken up the cause. Kilgore's discovery about herself came as a result of genetic testing. This part of her life story was made into a film Deadly Inheritance, which has been seen all over North America. "I use it myself as an introduction to anyone who's thinking about genetic testing. I remove myself as much as I can. That we are subjects is irrelevant. The way it was por- trayed was awesome. We didn't hide anything." The film prenliered in 1997, then was sold to CBC and was aired on Rough Cuts with Ann Medina. Sold again it is now being used as a med- ical training film Tor people who counsel those affected by genetic testing. "I get frequent calls from people who have watched it or are going to. It's getting lots of air time which is awesome." One person who has seen the video was a writer with Oprah. Kilgore was contacted and a story, for which the writer received an award, was published in that maga- zine in August. The genetic testing has made it easier for some people to decide whether or not to start a family. However, said Kilgore, "it's such an individual choice." Five of her six sisters, who are nurses, don't want to be tested. "Most had started families by the time Mom was diagnosed." Genetic testing has had a positive impact on research as well. Kilgore said because they can study that one gene it brings them closer to finding a treatment. As well because of its link to other diseases they will bene- fit from any progress. "I- carry a domino in my pocket because when they get treatment for HD, all others will fall." With the amount of research being done, Kilgore predicts a treatment for HD within the next 10 years. Now she said there is a "brain cock- tail" proven to reverse the symptoms when injected into a specific part of a mouse's brain. "Not just repaired, but reversed. I believe there will be a cure, which means my brother could have his •Iife back." Kilgore's eyes shine when she speaks of her brother, a successful stockbroker, athlete and family man. "He ran a half marathon with the support of six running angels," she said proudly. His efforts raised about $50,000 for the fight to cure HD. The biggest obstacle he and other HD victims face may be ignorance. Kilgore said initially when her brother started experiencing symp- toms he nearly lost his job. "They thought he had been drinking." Insurance companies will often deny ,coverage to someone because of the "possibility" of HD. Even the medical profession is at a hit of a,loss when it comes to dealing with the disease, said Kilgore. Because of its similarity to other neurological diseases, HD is often misdiagnosed and mistreated. As well caregivers are not trained prop- erly, she said. "Dealing with someone with HD can be scary. One of the common ways of dying for HD patients is choking. Even though a caregiver may grind the food, that doesn't have anything to do with the swal- lowing mechanism. They need to know how and when to give the food." That HD destroys the body, but leaves the mind intact, can be espe- cially frustrating for the patient. "They are aware of everything going on around them, but can't verbalize because everything is slowed down." She explains that it may take someone with HD minutes to answer a question. By then, the caregiver may take matters into their own hand which can then result in the patient becoming combative because what is happening is not what they want- ed. -"They need to be trained that it takes longer for someone with HD to communicate." Kilgore's mother was in a total of three different care facilities over a period of 20 years, and "every time she moved my sister would go in and train the staff." The problem, Kilgore said, is that staff at many of these places are already overworked and the instance of HD is so low they do not gain the experience. So -that families are prepared to deal with the disease, the Huntington Society has its own social workers to help. "That's unique and' it's fabu- lous." Of money raised for the Society, only four per cent, goes to administration. The Society was started by a school principal with no connection to Huntington Disease. "He had been approached by a student who c-17 -;ztk ir had a relative with HD. He didn't know how to help so he started the Huntington Society." Saying there is a lot of support from head office for volunteers like herself, Kilgore said her role, is to learn, then share that knowledge with-others. She does two major fundraisers. The amaryllis campaign is in October. The other, "and this is real- ly exciting" is the Huntington Indy Go-Kart Challenge on the second Sunday in September. This year for the first time it is being held on The Square in Goderich. The event, she said, is going to bigger than ever before, and she would appreciate any assistance she could get. "I real- ly need help to pull this together. Anyone affected by, or touched by HD please call me at 524-5853." Kilgore also invites people to call that number if they want information on HD or genetic testing. As well she suggests checking the website at www.hsc.ca.org. M-T council debates gravel 175 Lecr7P-- By Elyse DeBruyn Citizen staff Council passed the motion to use Three-quarter inch gravel on Morris- , Turnberry roads that will have an application to be paved this year, after discussion at the council meet- ing on May 4.' Mayor Dorothy Kelly and Councillor Lynn Hoy suggested using three-quarter inch A gravel on municipal roads this year as opposed to the five-eighth size used in previ- ous years. She said she was informed by "reliable sources" that three-quarter inch gravel would protect the roads better. "The roads are in such bad condi- tion, we should try it for this year. What have we got to lose?" said Kelly. Deputy mayor Bill Thompson said a lot of damage results over time from the "horses and buggy" wheels digging into the pavement. "If it doesn't work then we can go back to the other stuff. We might as well try it," said Thompson. Kelly asked Barry O'Krafka, pub- lic works co-ordinator, for his opin- ion on the matter and he said the round stone (bigger gravel) will come through just as much as the crushed stone, but there will just be more. "It's crushed gravel so it has frac- tured crushed stone and stone dust. The bigger gravel has more loose stone on top," said O'Krafka. He said he had talked to "people and they said that the larger gravel isn't necessarily better." But Kelly said she was "told by a reliable gravel company that (larger gravel) was the the way to go to help against the damage from the bug- gies." Councillor Paul Cowing suggest- ed doing a small spot of the three- quarter inch 'gravel first instead of all the roads. "WouldnZt it make more sense to do a small spot first? What if doesn't work and we did the whole Munici- pality?" said Gowing. Kelly said she Was prepared to move the motion for the three-quar- ter inch gravel. Thompson seconded it.