Young’s father was diagnosed with HE when she was 15, and it came as a shock. She and her mother noticed changes in him, Young says, including forgetfulness, bad breath, and issues with his balance and coordination, but attributed it to his drinking. It wasn’t until her father couldn’t find his way home from work one day — from an office he had worked at for more than 20 years — that they realized there was a deeper issue.
Young compares the experience to that of a lobster in a pot that doesn’t notice the gradual change in water temperature as it comes to a boil.
Many families of loved ones with HE share similar experiences, says Jasmohan Bajaj, MD, a professor and a gastroenterologist at the Stravitz-Sanyal Institute for Liver Disease and Metabolic Health at Virginia Commonwealth University School of Medicine in Richmond, Virginia.
“Symptoms of HE can be quite subtle and often go unnoticed by people who are familiar with the patient,” Dr. Bajaj says.
Initial symptoms can include mood swings, changes in sleep patterns, and difficulty with fine motor tasks like writing. As HE progresses, it can cause personality changes, tremors or twitching, severe confusion, significant problems with memory and motor skills, and even coma.
This is what makes increasing awareness around HE so important, Bajaj says, noting that the condition is largely treatable and sometimes reversible if caught early.
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