Reduced psychological distress in familial chylomicronemia syndrome after patient support group intervention

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 th...

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Bibliographic Details
Published inJournal of clinical lipidology Vol. 12; no. 1; pp. 240 - 242
Main Authors Wilson, Leah M., Cross, Russell R., Duell, P. Barton
Format Journal Article
LanguageEnglish
Published United States Elsevier Inc 01.01.2018
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Summary: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. •Familial chylomicronemia syndrome is a rare life-threatening condition.•Management is challenging due to high burden of illness and decreased quality of life.•Recurrent pancreatitis is common.•Patients with familial chylomicronemia syndrome often suffer daily stress and anxiety related to their illness.•Support group intervention may help reduce stress and empower patients.
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ISSN:1933-2874
1876-4789
DOI:10.1016/j.jacl.2017.11.002