Experiences of adolescents living with Silver-Russell syndrome.
Lisa Marie BallardElizabeth JenkinsonChristopher D ByrneJenny C ChildHazel InskipOluwakemi Lokulo-SodipeDeborah J G MackayEmma L WakelingJustin Huw DaviesI Karen TempleAngela FenwickPublished in: Archives of disease in childhood (2021)
Adolescents with SRS may experience psychosocial difficulties from as young as 10 years old related to feeling and looking different; pain, disability and fatigue; anticipated stigma; and future challenges around employment. We discuss these findings in relation to recommendations for the care of adolescents with SRS to prepare them for adult life.