Living with Moebius syndrome

Abstract

Moebius syndrome is a congenital neurological disorder that impacts facial expression, communication and appearance. In this article, the authors will discuss the psychological and social impacts of living with this rare form of facial palsy. Existing research suggests that patients may face challenges in developing psychological wellbeing, positive body image and in communicating effectively with others. Therefore, recommendations for nursing practitioners in how to best support this patient group are discussed.

Moebius Syndrome: What We Know So Far

“…Moreover, individuals with Moebius syndrome may struggle with developing and maintaining social relationships and a positive body image. These challenges can be overcome by healthcare professionals actively listening to the patients during their interactions, deriving social support from local charities, and employing cognitive behavioral therapy as well as social skills training to hone the patient’s abilities to communicate in a social setting [ 42 ].…”

“…Moreover, the enhancement of motor and sensory abilities via early rehabilitation along with support from parents can further improve the long-term physical and psychological prognosis of children with Moebius syndrome [ 2 ]. Social stigmatism against neurological disorders with visible signs, leading to a general lack of support from people, especially parents, can be devastating for the psychological state of children with Moebius syndrome [ 42 ]. Ora-facial and limb deformities can be corrected through surgical interventions and may improve rehabilitation.…”