This paper is in the following e-collection/theme issue:

Health and Risk Communication (57) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1798) Peer-to-Peer Support and Online Communities (722) Infoveillance, Infodemiology, Digital Disease Surveillance, Infodemic Management (1089) Infodemiology and Infoveillance (1465)

Published on in Vol 4 (2024)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/46693, first published .
The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: Content Analysis

The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: Content Analysis

The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: Content Analysis

Authors of this article:

Emily Pearce1 Author Orcid Image ;   Hannah Raj2 Author Orcid Image ;   Ngozika Emezienna1 Author Orcid Image ;   Melissa B Gilkey3 Author Orcid Image ;   Allison J Lazard4 Author Orcid Image ;   Kurt M Ribisl3 Author Orcid Image ;   Sharon A Savage1 Author Orcid Image ;   Paul KJ Han5 Author Orcid Image
Article Authors Cited by (2) Tweetations (12) Metrics

Journals

  1. Pearce E, Majid A, Brown T, Shepherd R, Rising C, Wilsnack C, Thompson A, Gilkey M, Ribisl K, Lazard A, Han P, Werner-Lin A, Hutson S, Savage S. “Crying in the Wilderness”—The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis. JMIR Formative Research 2024;8:e64343 View
  2. Hindelang M, Sitaru S, Zink A. Tracking Public Interest in Rare Diseases and Eosinophilic Disorders in Germany: Web Search Analysis. JMIR Infodemiology 2025;5:e69040 View