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Full-Text Articles in Family Medicine
Unreliable Bodies: A Follow-Up Twenty Years Later By A Mother And Daughter About The Impact Of Illness And Disability On Their Lives, Kaethe Weingarten, Miranda Worthen
Unreliable Bodies: A Follow-Up Twenty Years Later By A Mother And Daughter About The Impact Of Illness And Disability On Their Lives, Kaethe Weingarten, Miranda Worthen
Faculty Publications
We are a mother and daughter, both health care professionals, who offer a follow-up to an article we published twenty years ago about the impact of each other’s ongoing, serious medical problems on our relationship. In this article, we contribute a long-term perspective on the differences between having an illness that is well or poorly understood by medical professionals and the lay community. We also discuss health in the cont ext of identity formation and life stage, as during this interval the daughter left home, graduated college, married, and had two children. Also in this period, the mother survived a …
Experiences Of Parents Caring For Infants With Rare Scalp Mass As Identified Through A Disease-Specific Blog, Miranda Worthen, Tara Leonard, Thomas Blair, Nalin Gupta
Experiences Of Parents Caring For Infants With Rare Scalp Mass As Identified Through A Disease-Specific Blog, Miranda Worthen, Tara Leonard, Thomas Blair, Nalin Gupta
Faculty Publications
Background: Delayed subaponeurotic fluid collection (DSFC) is a self-limited disorder of unknown etiology characterized by a benign, fluid-filled mass in the subaponeurotic layer of an infant's scalp. While a few case series describe DSFC, the experiences of families whose infants develop this condition have not previously been reported.Methods: We used a disease-specific blog to evaluate the experiences of 69 families affected by DSFC. We identified self-reported clinical features of DSFC and qualitatively analyzed the families' experiences with obtaining a diagnosis and care for their infants.Results: Infants presented in several clinical settings, and multiple diagnostic procedures were administered, including ultrasound (46%), …