Quality of life and support needs in children, adolescents, and young adults with facioscapulohumeral dystrophy, a mixed-method study

DISCUSSION: Quality of life in childhood FSHD is diminished caused by their physical limitations, altered appearance, fear of social rejection, and uncertainty of the disease progression in the future. A fear of social rejection most likely contributes to striving for normality regardless of physical discomfort. Support should be focused on acceptance and coping with hurtful comments. It should preferably be individualized, easily accessible and not offered as therapy but rather as tutoring for children.PMID:38692157 | DOI:10.1016/j.ejpn.2024.04.006

Source: European Journal of Paediatric Neurology - May 1, 2024 Category: Neurology Authors: Jildou N Dijkstra Nathani ël B Rasing Helena T M Boon Sandra Altena-Rensen Edith H C Cup Anke Lanser Ietske J Siemann Baziel G van Engelen Corrie E Erasmus Nicol C Voermans Source Type: research