Usher syndrome, an unseen/hidden disability: a phenomenological study of adults across the lifespan living in England

A group of researchers investigated the psychosocial impacts of living with Usher syndrome in a small group of individuals living in the United Kingdom. The study focused on four themes through the lens of the social model of disability and concepts of identity: the diagnostic experience, family relationships, belonging, and professional support. It was found that individuals experienced a wide range of emotions in response to learning of their diagnosis from anger, to depression, and even relief. Participants experienced a range of family support, from overprotectiveness to lack of support, while caregivers were also found to experience grief with the diagnosis.

Participants expressed difficulty with forming relationships, socializing, and self-identity. Feelings of vulnerability, when needing to use assistive technology or mobility devices, made it difficult to form authentic relationships with peers. 

What this means for Usher syndrome: The study highlights challenges faced by those with Usher syndrome. Additionally, it highlights the importance of education and addressing societal attitudes towards disabled people. Finally, the range of communication methods underscores that individual needs must be taken into account and accommodated on a person-to-person basis for support. 

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