CHARGE ASSOCIATION LOOKING AT THE FUTURE - THE VOICE OF A FAMILY SUPPORT GROUP

CHARGE association is a non-random collection of congenital anomalies. The condition is becoming more widely known to medical and educationa l professionals. The number of children diagnosed is increasing, proba bly because of the greater awareness of this condition. This paper con siders some of the long-term management problems which are often defer red in the early months, when acute life threatening problems take pri ority. Questionnaires were sent to parents via the CHARGE Association Family Support Group, UK. Thirty-nine were returned and incomplete inf ormation was sought by personal contact or telephone. The majority of children were known professionally to one or both authors. and informa tion was therefore checked from medical and educational notes. There i s still widespread misunderstanding about the impact of multiple disab ility, especially when this includes multi-sensory impairment, on the early development of the child. Therefore, the information collected f rom the study has been from an educational and medical perspective, th ereby aiding the understanding of these complex problems. At the paren ts request, information was gathered about certain teratogens, of whic h Lindane, an organophosphate, is highlighted.