The voluntary associations formed to provide information and emotional support to families of patients suffering from a particular disorder, whether inherited or acquired, do a great deal of good work and make a decided contribution to management that goes unrecorded in the balance sheets of health services. Many such associations produce publications of various sorts, ranging from simple news sheets to more comprehensive volumes.
The Cornelia de Lange Syndrome Foundation of Collinsville, Connecticut has produced a series of such publications. A small pamphlet at 75 cents called ‘‘Facts about Cornelia de Lange Syndrome’’ is a l,000-word news sheet explaining simply what the syndrome is, how it can be recognised, its incidence and diagnosis, life expectancy, possibilities of prenatal diagnosis, and expectations of a child born with it. More comprehensive is the little booklet at $2.00 called ‘‘Facing the Challenges: a parents’ guide to Cornelia de Lange Syndrome’’, containing some 60 pages dealing more fully with the subject. It explains the diagnosis, the causes, prenatal testing, the extent of mental retardation, the incidence, life expectancy, behaviour, the involvement of different body systems, and the problems to which they give rise and how they are treated. This is highly informative and well written in a clear and easily understandable style. Most unusual however is the third publication at $15.00, an album of photographs and case histories including addresses and telephone numbers of some 240 patients. It is perhaps of more appeal to the geneticist and paediatrician interested in the range of variation of manifestation of the syndrome. It may well be distressing to parents in whose young child the diagnosis has just been made, but for those who have come to accept their child’s condition, to know that there are others equally or much worse affected may be some consolation.
Details of those publications may be obtained from the Cornelia de Lange Syndrome Foundation Inc., 60 Dyer Avenue, Collinsville,Connecticut 06022, United States of America. The prices are reasonable and they are good value.
Derek Roberts