Publications by authors named "Wendy Cogan"
Article Synopsis
- Around 10% of the U.S. population suffers from a rare disease, but patients often struggle to find knowledgeable healthcare providers and reliable information.
- A study focused on Ehlers-Danlos syndrome analyzed social interactions in support groups, primarily through Facebook, revealing that 102 respondents formed 448 connections and engaged in daily discussions.
- The findings suggest that healthcare providers can leverage these social networks to share educational resources and gather patient feedback, fostering a sense of community for those affected by rare diseases.
Resource utilization and multidisciplinary care needs for patients with Ehlers-Danlos syndrome.
Mol Genet Genomic Med
November 2022
Background: Ehlers-Danlos syndrome (EDS) represents a family of heritable connective tissue disorders with overlapping phenotypic features, frequently including joint hypermobility, tissue fragility, and skin hyperextensibility. Comorbid symptoms are common for patients with EDS and include multiple body systems marked by neurologic, cardiovascular, gastrointestinal, musculoskeletal issues, chronic pain, headaches, and anxiety and depression. The many comorbidities lead to high disease burden, which requires greater healthcare utilization.
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