The work experience of a patient affected by Williams Syndrome: a pilot project at the Bambino Gesù Children’s Hospital

Francesca De LorenzoEmail author View ORCID ID profile,
Marina Macchiaiolo,
Carla Maria Carlevaris and
Andrea Bartuli

Orphanet Journal of Rare Diseases201712:107

DOI: 10.1186/s13023-017-0657-6

Received: 20 October 2016

Accepted: 16 May 2017

Published: 31 May 2017

Abstract

A new approach has been designed at the Bambino Gesù Children’s Hospital in Rome aimed at increasing empowerment in Williams Syndrome individuals through tutor-assisted work activities. Williams Syndrome is characterized by a combination of distinguishing physical traits, congenital anomalies, intellectual disabilities, and a specific developmental profile.

This manuscript describes the case of a Williams Syndrome patient.

There are only few papers in the scientific literature describing interventions targeting improvement in the quality of life of adult Williams Syndrome individuals. Therefore, this experience may prove useful to several patients, their families, and the experts helping them.

We described an example of intervention aimed at guiding and facilitating a Williams Syndrome patient within a work environment, taking into consideration the peaks and valleys of these individuals’ specific abilities.

Based on our results, we also stressed the need to promote a set of projects and initiatives aimed at enhancing as much as possible self-sufficiency and psycho-affective balance in Williams Syndrome individuals, in order to protect their dignity and self-esteem.