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ALF's VP of Programs Lynn Seim, Director of Education and Training Phil Scarfo, and patient advocate Lynette Kozelenko at our HE Webinar on 1/23.
On January 23, 2014, more than 300 people tuned in to the American Liver Foundation’s webinar on hepatic encephalopathy (HE), the first of a four-part webinar series ALF will be presenting on a variety of liver disease topics.
Panelists included Dr. Fredric Gordon, medical director of Liver Transplantation and Hepatology at Lahey Hospital and Medical Center, and patient advocates Lynette Kozelenko and Philip Scarfo who poignantly shared their stories about the challenges and triumphs of living with a serious illness. All three participated in a live question and answer session following the presentation.
Lynette Kozelenko was a successful purchasing executive for a large company when she was diagnosed with stage 4 cirrhosis and HE in 2008. “In the beginning, I had a hard time sleeping and dealing with the anxiety about having a life-threatening disease,” she says. “Yes, it could be sad and depressing but I have found healthy ways to cope. Exercise, eating well, meditation and listening to music combined with strict adherence to my treatment regimen have helped dramatically improve my liver function. I have more energy, sleep less and am very excited about what the future holds.”
Dr. Gordon concurs adding that HE affects patients differently and that overcoming it is not all about medication. Goals, positive thinking and lifestyle are also important.
Philip Scarfo’s journey began in his late teens when his liver started to show the effects of fatty liver disease, a condition where fat builds up in the liver as a result of poor eating, obesity, hypertension and high cholesterol. By 23, he had cirrhosis and by his early 40s, HE. “It was a difficult time,” says Philip. "At a certain point, I had to stay close to home because I would sometimes get confused and not know who I was or where I was.” Twenty years later, with a new liver, Philip has a new outlook and a new passion – ballroom dancing – something he never dreamed he would do.
Says Lynette: “I am very happy to be the face of liver disease if that helps others. If I can convey one message to one person living with HE, it is this: You are bigger and stronger than your disease. You can live through a diagnosis, prosper and inspire others.”
To learn more about Lynette and Philip’s stories, click here.
And visit www.hepc123.org for information and resources about hepatic encephalopathy.