Lymphedema; Lymphatic system; Rare diseases; Human comfort
Primary lymphedema and intestinal lymphangiectasia are both rare conditions that result from abnormalities in the lymphatic system. The combination of these two conditions in a single individual is extremely unusual. This case study aimed to describe the course of occupational therapy treatment and outcomes for one individual with primary lymphedema with intestinal lymphangiectasia, including ongoing intervention with occupational therapy treatment using complete decongestive therapy and outcomes related to functional, meaningful quality of life. Information was collected through in-depth interviews with the individual, her mother, and her occupational therapist, occupational therapy records, Quality of Life Scale, and observations of the individual at the occupational therapy clinic, her school, and home. Findings revealed four prevalent themes: life-long management and establishing a routine, lack of awareness across health professionals, need for customized treatment, and well-adapted individual. The purpose of this study was to describe the course of treatment, however, the study also uncovered psychosocial issues involved with life-long adaptation, including self-efficacy and self-perception. By describing the course and experience of one individual’s treatment process, an insider’s perspective has been documented and made available to those who may face similar challenges in seeking or delivering effective specialized occupational therapy treatment.
Date of Completion
Master of Science in Occupational Therapy (MSOT)
Date of Award
University of Puget Sound