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.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Child AH, Rust DL. A booklet for teachers. Marfan Association UK. 1993.
Bernhardt A, Haul P, Weiner J, Weiss J. A booklet for teenagers. Courtesy of NMF USA. Marfan Association UK. 2005
Hofman KJ, Bernhard BA, Pyeritz RE. Marfan syndrome: neuropsychological aspects. Am J Med Genet. 1988;31(2):331–8.
Schneider MB, Davis JG, Boxer RA, et al. Marfan syndrome in adolescents and young adults: psychosocial functioning and knowledge. J Dev Behav Pediatr. 1990;11:122–7.
Rust DL, Howard FM. Before and after birth. Marfan Association UK. 1998.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Additional information
All the following publications (excluding 5 & 6) are available from the Marfan Association UK, Rochester House, 5, Aldershot Road, Fleet, Hampshire, GU52 8NG. Tel: 01252810472
Rights and permissions
Copyright information
© 2016 Springer-Verlag London
About this chapter
Cite this chapter
Child, A.H., Rowntree, J. (2016). Psychosocial Aspects of Marfan Syndrome. In: Child, A. (eds) Diagnosis and Management of Marfan Syndrome. Springer, London. https://doi.org/10.1007/978-1-4471-5442-6_26
Download citation
DOI: https://doi.org/10.1007/978-1-4471-5442-6_26
Published:
Publisher Name: Springer, London
Print ISBN: 978-1-4471-5441-9
Online ISBN: 978-1-4471-5442-6
eBook Packages: MedicineMedicine (R0)