My Story: Living with Narcolepsy

Abstract

is her own clinical trial with a cohort of 1. Tricia has been diagnosed with narcolepsy with severe cataplexy. This dual diagnosis is characterized by the inability to maintain voluntary wakefulness, abnormal REM, and sudden paralysis or weakness in muscle tone without loss of consciousness. If left uncontrolled, her symptoms make it nearly impossible for her to live normally. Her ability to live a higher quality of life is made possible by a cocktail of medications that were all developed for purposes other than narcolepsy. Patients and physicians facing uncommon or atypical disorders like Tricia's must consider a complicated series of decisions. Most therapeutic regimens and pharmaceutical developments are based on treating the underlying mechanism of a disease, a pattern that is growing more pronounced following tremendous advances in basic science and translational research. But what happens when that paradigm fails? How do things change for both patient and physician when determining an accurate diagnosis-let alone treatment-can take years? What happens when it is not possible to address the mechanism of a disease, when the clinical focus must be shifted to treating symptoms? The ethical and professional challenges to the treating physician are very real, but so too are the thoughts and reactions of the patient. In her own words, this is Tricia Higgins' story.When I was 34 years old my world started caving in. I was a mother of 3, wife to a wonderful man completing his third degree, homemaker, emergency room nurse, and good friend to anyone in need. I was a volunteer in my children's classrooms and a CCD teacher at our local Catholic Church. Yet suddenly I was the one in need, a role I hated from the beginning and still hate today.