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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MoebiusSyndromeFoundation Conference where
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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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Social Side of Moebius:
A Focus Group of Teenagers with MoebiusSyndrome
Andreea Barbu, Thanh Nguyen
This focus group study examined the social experiences of 10 adolescents ages 12-17 with Moebius Syndrome, a rare condition involving congenital facial paralysis. Content analysis revealed five themes: social engagement/disengagement; resilience/sensitivity; social support/stigma; being understood/misunderstood; and public awareness/lack of awareness of Moebius Syndrome. Compared to previous research on adults with...
This focus group study explored the social interaction experiences and strategies of 12 adults with Moebius syndrome, a rare congenital condition characterized by facial paralysis. Content analysis revealed five themes of social functioning: social engagement/disengagement, resilience/sensitivity, social support/stigma, being understood/misunderstood, and public awareness/lack of awareness of Moebius Syndrome. Participants used...
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...
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,...
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...
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...
Early diagnosis is essential for proper management of the Marfan syndrome, yet due to diverse manifestations of the disorder, specific diagnosis is difficult. Excessive growth of the long bones constitutes a major characteristic of the syndrome; thus differences in growth patterns from those of the average child suggest a possible...
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