Moebius syndrome is a rare congenital condition that results in facial paralysis. A recent study of adults with Moebius syndrome identified their social challenges and coping strategies. The present study extended previous research by examining these factors among teenagers with Moebius syndrome. The study included 10 teenagers with Moebius Syndrome...
Moebius syndrome is a rare congenital condition that results in facial paralysis. A recent study of adults with Moebius syndrome identified their social challenges and coping strategies. The present study extended previous research by examining these factors among teenagers with Moebius syndrome. The study included 10 teenagers with Moebius Syndrome...
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, Shivangi Agrawal, & Kathleen Rives Bogart, PhD
Oregon State University
Introduction
Conclusions
Methods
Hundreds of millions of people worldwide with rare diseases face unique challenges to quality of life (QoL), including stigma and limited support. To address these concerns, many rare disease organizations offer support conferences for people to meet others with their condition. This is the first research to examine the effects...
Purpose/Objective: According to Social Identity Theory, minority group members, like people with disabilities, manage stigma by either “passing” as majority group members or identifying with their minority group. Approximately 15% of the world’s population has a disability, but only a fraction of those individuals identify themselves as people with disabilities....
Background
Moebius syndrome is a rare congenital disorder resulting in impaired facial and eye movement. People with rare diseases like Moebius syndrome experience stigma and a lack of specialized information. Support conferences may provide important forms of social support for people with rare disorders.
Aims
To examine reasons for attending,...
The social and medical models of disability are sets of underlying assumptions explaining people's beliefs about the causes and implications of disability. The medical model is the predominant model in the United States that is associated with the belief that disability is an undesirable status that needs to be cured...
Self-disclosure is a complex process that impacts social, cultural, and individual contexts of people’s lives. Under ideal circumstances, disclosure strengthens social bonds, enhances intimacy in relationships, and fosters a more unified sense of the self. Disclosing information about a stigmatized identity, however, is associated with a variety of risks and...
Moebius Syndrome is a congenital neurological disorder that results in weakness or paralysis of the sixth and seventh cranial nerves, resulting in inability to form facial expression. The current study examined the relationship between orientation of describing Moebius Syndrome and the participant ratings of pictures of individuals with Moebius Syndrome...