Smith-Magenis Syndrome is a complex disability. Each individual will exhibit different aspects of the characteristics and so each family with develop their own ‘coping’ strategies. It is important to get professionals involved early on to provide the family with the support needed.
Input from paediatricians, Speech and Language therapists, Physiotherapists, educational professionals, Portage, social services, Child and Adult mental health services etc are all very important and a multi- agency approach is vital!
Smith-Magenis Syndrome: Guidelines for Parents and Teachers
Our booklet provides a lot of practical helpful advice about coping with all aspects of SMS. It covers sleep, social relationships, behaviours, feeding difficulties, toilet training, dressing, school concerns, behaviour in adulthood, siblings and sources of further help.
This booklet is available free from the foundation and each member will automatically receive one on joining the foundation. You can also download a free copy (pdf) or purchase a Kindle version at £1.49 through Amazon.
This booklet has now also been translated into German, Portuguese, and Italian and can be downloaded using the links below. Many thanks to Dr. Alexander Ströher (German), Fernanda Perla (Portuguese), and Xheni Prebibaj (Italian) for the booklet translations.