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Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases.
JMIR Hum Factors
December 2024
Center for Bioethics, Indiana University School of Medicine, Indianapolis, IN, United States.
Background: The rarity that is inherent in rare disease (RD) often means that patients and parents of children with RDs feel uniquely isolated and therefore are unprepared or unsupported in their care. To overcome this isolation, many within the RD community turn to the internet, and social media groups in particular, to gather useful information about their RDs. While previous research has shown that social media support groups are helpful for those affected by RDs, it is unclear what these groups are particularly useful or helpful for patients and parents of children with RDs.
View Article and Find Full Text PDFMy beloved husband, Robert Steel, died at 58 from MAPT FTD, a disease that stretches back through his family's generations. Before we married he told me his father died of early-onset Alzheimers and he was terrified he would inherit that disease. In his early 50s he began exhihibiting symptoms that I attributed to stress-his work as a respected high school teacher began to slip, he began to lose the ability to have a visual map in his head, he began to repeat stories, his behavior became more compulsive, forgot how he was related to a favorite cousin.
View Article and Find Full Text PDFClinical Manifestations.
Alzheimers Dement
December 2024
Department of Communication Sciences and Disorders, University of Wisconsin-Madison, Madison, WI, USA.
Background: Sensitive screening for early Alzheimer's disease (AD)-related cognitive decline are needed. Prior research links high beta-amyloid (Aβ) levels to reduced proper name (PN) retrieval in individuals without cognitive impairment. We examined whether language-related regional tau from PET associated with Logical Memory (LM) proper name recall, accounting for LM covariates.
View Article and Find Full Text PDFBackground: There is growing evidence that discourse (i.e., connected speech) could serve as a cost-effective and ecologically valid means of identifying individuals with prodromal Alzheimer's disease.
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