Daily Functioning and Quality of Life in Patients with Sjögren-Larsson Syndrome.
Pippa StapsImelda J M de GrootMarjo H J C van GervenMichèl A A P WillemsenPublished in: Neuropediatrics (2019)
Despite the large disruptions of daily functioning, patients with SLS are according to their parents generally content with their quality of life and participation. There was a broad range in reported problems. We found it very useful to systematically ask parents about their children's feelings and needs, to better understand the meaning of living with a complex disorder like SLS.