Huntington's disease casts dark shadow over family membersBy MELINDA MAWDSLEY Diane Dauven is watching her father die of Huntington’s disease, knowing there is a 50-50 chance the same debilitating disease will kill her. Huntington’s is a neurological disease in which brain cells degenerate causing uncontrolled movement, irrational behavior and emotional instability. It is genetic, passed from parent to child. There is no cure, and it is fatal. May is a national awareness month for Huntington’s disease. Dauven was six months pregnant with her second daughter when Dauven’s father, John Joseph Dauven II, was diagnosed with Huntington’s. Dauven’s parents knew the family was at-risk for the disease, but no one told Dauven. “My mother made a choice not to tell us (Dauven and her brother) because she wanted us to have a normal life,” Dauven said. Had Dauven, 42, of Grand Junction, known she could pass the fatal disease to her children, she would have adopted, had in vitro fertilization using healthy eggs or never had children at all, she said. “What I think is a horror of this disease is you are fully aware and understand, but you are trapped in your body and unable to communicate,” said Dauven, noting a noticeable difference between Huntington’s and Alzheimer’s disease, a fatal brain disorder that leads to dementia. Examples of Huntington’s early symptoms are mood swings, difficulty driving or remembering facts. In hindsight, Dauven said her father was symptomatic in his 30s when he began shoplifting, which was inexplicable behavior for the successful man. Her father later became obsessive compulsive and started collecting junk, she said. Now John Joseph, 65, lives in a nursing home in Buhl, Idaho, where the nurse in charge understands Huntington’s and got the reclusive John Joseph out of his room recently for a social outing to eat pie with others. “He loved it,” Dauven said. Dauven’s brother died of heart disease and never was tested for Huntington’s. Dauven, along with her friends with the Western Slope Support Group of the Rocky Mountain Chapter of the Huntington’s Disease Society of America, are hoping to use this awareness month as a platform to talk about the disease in the Grand Valley. As a junior political science major at Mesa State College, Dauven has given several speeches in classes. Huntington’s has been a popular topic as she becomes more and more knowledgeable about the disease. Many of her classmates “had never heard of it,” she said. Dauven wants that to change. A single mother of two, Dauven is living her life for her daughters with a hope of becoming more active in community politics. Her father used to be an activist in Utah. Dauven hopes she inherited that trait from him, but not the Huntington’s. Dauven could be tested to find out if she inherited the gene for Huntington’s, but she isn’t ready. “If you are not symptomatic and there is no cure, what’s the point?” Dauven asked. Dauven will eventually find out, though. Either the disease will show itself, or she will be tested before her daughters, Kendal Dawson, 14, and Lauren Dawson, 11, are ready to marry and have children. E-mail Melinda Mawdsley at mmawdsley@gjds.com.
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