Social, familial and medical aspects of Usher syndrome in Colombia.
A psycho-social study was performed in 19 Colombian families with 40 affected individuals with Usher syndrome, identified through our national screening program for this disease in Colombia. The study was aimed to understand their needs, kind of familial inter-relationships, and social and familial implications of the patients' double sensorial limitation, in order to provide enough information to support the importance of early diagnosis, appropriate genetic counseling, and the establishment of adequate educational and rehabilitation programs in Colombia.
Tamayo
M L
ML
Instituto de Genética Humana, Facultad de Medicina, Universidad Javeriana, Bogotá, Colombia.
Rodriguez
A
A
Molina
R
R
Martinez
M
M
Bernal
J E
JE
D000293:Adolescent; D000328:Adult; D001766:Blindness / Q000453:epidemiology / Q000235:genetics* / Q000628:therapy; D002648:Child; D002675:Child, Preschool; D003105:Colombia / Q000453:epidemiology; D003638:Deafness / Q000453:epidemiology / Q000235:genetics* / Q000628:therapy; D005190:Family / Q000523:psychology; D005260:Female; D006296:Health Services / Q000600:supply & distribution; D006801:Humans; D008297:Male; D008875:Middle Aged; D015995:Prevalence; D012944:Social Support; D013577:Syndrome