A Meeting of the ALF Patient Advisory Committee
Eleven individuals whose lives have been affected by hepatic encephalopathy (HE) came together in July to become the American Liver Foundation’s newest patient advocates as members of our National Patient Advisory Committee (NPAC). Eight of this cohort are liver patients and three are caregivers. They have or had underlying diseases that caused the HE, including hepatitis C, alcohol-related liver disease, pediatric metabolic liver disease, primary biliary cholangitis and primary sclerosing cholangitis.
HE occurs when the damaged liver can no longer remove toxic substances from the blood. These toxins build up and can travel through the body until they reach the brain, causing mental and physical symptoms. These can be almost imperceptible or almost incapacitating and can include changes to coordination and speech, forgetfulness, shakiness, lack of energy and inappropriate behavior. Concentration can be affected, and many patients feel extremely anxious.
The cohort will be doing the same activities as the other NPAC cohorts which include media opportunities, social media, and advocacy activity and the training was like that of other cohorts. The first day consisted of an overview of the American Liver Foundation, media training and social media training. On the second day, we held a training on advocacy and one on community education programs, and an overview of the responsibilities of NPAC members. Additionally, Dr. Rockford Yapp provided a HE medical overview. During the second day we also filmed the NPAC members and Dr. Yapp being interviewed individually. These interviews are being transformed into short videos for our website and social media.
Jacqueline Valente, a new NPAC member, said, “I definitely improved my story telling ability. Learning not to ramble, emphasize the key points in my story and to put emphasis on a take away point. It was fun to practice on video; I had never done that before. It was also helpful to interact with the other members of the group and listening to their HE stories. The irony of explaining HE to others who have not experienced HE is one of the symptoms of HE is loss of memory and time. It is important that caregivers especially understand the symptoms of HE.”
We are confident that all eleven individuals will represent ALF well, and will provide a voice and face for those affected by a disconcerting, often misunderstood, aspect of liver disease.
President & CEO
American Liver Foundation
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