ABSTRACT
Some people with phenylketonuria who were born before screening began were never treated and are still alive. Here we report that far fewer people with untreated phenylketonuria were detected than are thought to exist (about 2000). The majority of those traced had high support needs, challenging behaviour and other symptoms of phenylketonuria. No significant differences were found between those who had or had not tried the phenylalanine-restricted diet. A randomised controlled trial is required to examine the effect of trying the low-phenylalanine diet for people with untreated phenylketonuria.
Subject(s)
Intellectual Disability/diagnosis , Phenylalanine/administration & dosage , Phenylketonurias/epidemiology , Adult , Aged , Dietary Supplements , Female , Health Surveys , Humans , Intellectual Disability/diet therapy , Intellectual Disability/therapy , Male , Middle Aged , Phenylketonurias/diagnosis , Phenylketonurias/diet therapy , United Kingdom/epidemiology , Young AdultABSTRACT
People with learning disabilities used to be seen as asexual or promiscuous and were discouraged from expressing their sexuality. However, with the growth of the rights movement, attention has turned to the dilemma of how to both empower and protect people with learning disabilities in relation to their sexuality. A recent research project showed that, on average, adults with learning disabilities knew much less about sex and understood much less about sexual abuse than non-disabled young people aged 16 years. Sex education made a significant difference to their knowledge and understanding however. The implications of the study for services for people with learning disabilities and for definitions of capacity to consent to sexual relationships are discussed.