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Reduced psychological distress in familial chylomicronemia syndrome after patient support group intervention
Leah M Wilson1, Russell R Cross2, P Barton Duell3
1Division of Endocrinology, Diabetes and Clinical Nutrition, Oregon Health and Science University, Portland, OR, USA.
Abstract:
Familial chylomicronemia syndrome (FCS) is a rare genetic disorder that is associated with severe hypertriglyceridemia and complications that often include recurrent pancreatitis beginning in childhood. Patients with FCS frequently struggle to maintain normality in their lives as a consequence of the necessity to severely restrict their intake of dietary fat coupled with the constant threat of recurrent pancreatitis. Patients typically face a high level of psychological stress and anxiety in association with reduced measures of quality of life. Routine medical care for affected patients usually does not adequately address the day-to-day struggles that accompany a diagnosis of FCS, resulting in ongoing suffering for many patients. We describe herein the highly beneficial effects of a support group interaction for a patient with FCS.
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