Sunday, Jan 22, 2006
Dubai: A support group for families with Down's Syndrome children is trying to tear down the myths connected with the disorder by conducting a survey among parents in the UAE.
Denise Humberstone, the founding member of All 4 Down's Syndrome, said the group began asking members and other parents details of their family life. Some of the questions include their level of knowledge and awareness prior to the birth of their child.
She said the group also asked about their background, to see if their marriage was mixed.
"It's to dispel myths. Some people think mixed marriages are responsible for Down's syndrome. But it's an accident of birth. Down's syndrome is not specific to one group, race, religion, background or culture. It's across the board," said Humberstone.
Humberstone said the survey, which will be compiled into a database, will also give a basic idea on the prevalence and incidence rate of the disorder in the UAE. This will help the group formulate better plans and push for changes from the government.
"There is absolutely no data at all in the UAE [right now]," she said, adding the results should be in around April.
Inclusive education
Humberstone spoke to Gulf News at the sidelines of a two-day GCC Down's syndrome seminar organised by the group and British Council.
The seminar, presented by Professor Sue Buckley of the UK-based Down's Syndrome Educational Trust, focused on the importance of inclusive education and upbringing for Down's syndrome children in encouraging developmental growth.
Prof Buckley said children with the syndrome should not be deprived of the same stimuli as a normal child.
"If you put a normal healthy baby in a deprived environment, the babies don't smile unless someone talks to them and they don't roll over at the same age as others. It's important to treat the child as a person first, a baby like a baby, a teen like a teen and get them get out in the world," she added.
More than 200 people attended the seminar, which began yesterday. Commenting on the turnout, Humberstone said it showed the information gap on Down's syndrome in the UAE.
However, she said the awareness of Down's syndrome had improved compared to a decade ago as society was slowly accepting people with the syndrome.
"It's getting better. You can see more children with Down's syndrome on the streets today, expatriates and nationals," she said.
Prevalence
Most common chromosomal abnormality
Down's syndrome is the most common chromosomal abnormality and cause of developmental disability.
The frequency of Down's syndrome is estimated at one in 700 to 900 births worldwide. Out of 1,490 pregnant women aged between 20 to 24, one child will be born with Down's, at the age of 40 it is one out 106 births and at 49 it is one out of 11 births, according to a 1981 study by EB Hook. However, many children with Down's are born to women under 35 as most pregnancies occur in this age group.
Source: Wikipedia and Down Syndrome Educational Trust, UK
Gulf News 2006. All rights reserved.
