Psychosocial aspects of Marfan syndrome

Abstract

The diagnosis of a genetic disorder such as Marfan syndrome affects the entire family. Each member must adjust to the diagnosis, making allowances for it, while maintaining their individual self-fulfilment. Couples may experience a temporary strain in their relationship when they first learn that their child has Marfan syndrome. It is important to communicate to each other and to grandparents, aunts and uncles of the child, their hopes and fears. Common reactions include dismay, worry regarding the future, a tendency to blame oneself, one’s partner, or the doctors for the infant’s condition. Grieving for the loss of perfect health in the child must also be experienced. The whole family should offer support to the parents. Prolonged discussion as to the prognosis for the child, and a plan for medical and psychological support and contact with another family who have older Marfan syndrome children, should be arranged at interview with the doctor in charge of the child’s care.