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Meadow Vista woman raises awareness of silent killer

By: Gloria Beverage
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Arline Williams has endured severe nosebleeds and arrhythmia for more than 40 years. “I thought it was stress brought on by college and then by working and raising a family,” she said. “Then about eight years ago I developed a noticeable heart murmur.” The doctor suggested one diagnosis after another – each time giving Williams renewed hope for finding relief. But then Williams began to experience irregular heart rhythm and shortness of breath. “My cardiologist said my symptoms didn’t ‘line up,’” she recalled. “All this time my heart function was deteriorating and the right side was being overworked and enlarging.” Three years ago, the Meadow Vista resident was told she was a candidate for a heart transplant only to have her hopes dashed again. “The doctor called to say ‘you are not a transplant candidate because you have HHT,’” she said. “In that moment, all symptoms I’d experienced over the years came into focus.” HHT (Hereditary Hemorrhagic Telangiectasia) affects 1 in 5,000 people in America. It is an inherited disorder that affects blood vessels in the skin, lungs, brain, liver, nose and gastrointestinal system. Williams, 64, now realizes that her parents had suffered from HHT. “My mother would have severe nosebleeds and my father died of a ruptured aorta,” Williams recalled. “I think two of my children have inherited it.” Williams has since learned that early diagnosis and treatment can play a part in preventing those affected by HHT from becoming disabled or dying prematurely. In her case, the disorder had already taken its toll by the time doctors diagnosed it. “Enlarged heart, small stomach, enlarged liver, profuse nosebleeds, fatigue…who is this person,” Williams recalls thinking in the months after the diagnosis. “It couldn’t be the robust person who walked three to four miles a day and was just learning horseback riding. I came to the realization I was, at the very least, hobbled by HHT. And it would be lifelong.” But Williams refuses to dwell on what she calls a “litany of woes.” Rather, she wants to draw attention to the disorder. “I’m what you would call an extreme case,” she said. “But it doesn’t have to go as far as mine. Go get genetic testing. There is help when it’s found early, but more research is needed.” It’s a mission that Williams’ 31-year-old son, Michael Hegglund, supports. A resident of Sunnyvale, Hegglund is running in Sunday’s HHT Race for Awareness in Long Beach. He and hundreds of other runners will be raising money and awareness for the HHT Foundation International, the only advocacy organization fighting for individuals with this disorder. “As long as you can hold it at bay, the prognosis is good,” she said. “Please remember HHT is genetic and never skips a generation. Many, still unaware, will be touched by it. Many unborn children will have it.” Williams maintains as active a lifestyle as her body will allow. Once a language instructor for a large international corporation in the Bay Area, Williams has developed a career as a writer, editor and publicist since settling in the foothills nine years ago. She has found pleasure and a form of emotional healing by painting abstracts with watercolors or mixed media. “I can tell what is going on in my mind,” she explained. “After I found out I had HHT, every flower I painted looked like my organs – my heart. I couldn’t help it.” Williams is also writing a novel loosely based on her childhood. She says that what keeps her going is the love and support of her husband, Charles, and her four children. At the end of the day, Williams has great hope for the future. “Research is the only way we can break through to the other side, so no one must ever again live under the cloud of a condition of unknown progression, forced to play the roulette of symptom management,” Williams concluded. To make a donation in support of Michael’s Run for Mom, visit www.active/com/donate/hht08. For more information on HHT, visit . or write HHT Foundation International, P.O. Box 329, Monkton, MD 21111.