Quality of Life

Diastrophic Dysplasia Booklet
Source/Author: Mary Carten and Vita Gagne with Dr. Charles Scott, Dr. Cheryl Reid and Dr. Monica Carten 
Resource
Booklet on diastrophic dysplasia for patients and families. Written in lay terms. Multiple pictures of people with diastrophic dysplasia. Discusses clinical features, mobility and development, anesthesia, pregnancy and resources.

Living with achondroplasia in an average-sized world: an assessment of quality of life.
Source/Author: Gollust SE, Thompson RE, Gooding HC, Biesecker BB.; Am J Med Genet A. 2003 Aug 1;120(4):447-58. 
Abstrac

Living with achondroplasia: attitudes toward population screening and correlation with quality of life.
Source/Author: Gollust SE, Thompson RE, Gooding HC, Biesecker BB.; Prenat Diagn. 2003 Dec 15;23(12):1003-8. 
Abstract
The study assessed attitudes toward prenatal screening for achondroplasia and correlation with quality of life in a population of individuals affected with achondroplasia and first-degree relatives.

Living with achondroplasia: quality of life evaluation following cervico-medullary decompression.
Source/Author: Ho NC, Guarnieri M, Brant LJ, Park SS, Sun B, North M, Francomano CA, Carson BS 
Abstract
Qualitative study on how this surgery ends up affecting quality of life in achondroplasia.

Medical complications of achondroplasia: a multicentre patient review.
Source/Author: Hunter AG, Bankier A, Rogers JG, Sillence D, Scott CI Jr.; J Med Genet. 1998 Sep;35(9):705-12. 
Abstract