With the incidence of Down Syndrome in the UAE being more than two times higher than the global average, it's crucial to debunk some of the commonly held misperceptions about the condition and what it means for those who have it. We spoke to Dr Ladimari Toledo Hoeppler, PhD, Managing Director, Social Skills Development / Independent Living skills at Dubai Down Syndrome Centre, to help dispel some of the major myths about this condition...
The incidence of Down's Syndrome (DS) among Emiratis in Dubai is 1 in every 320 births (1:319), higher than the world average of 1 in every 800 births, according to data released by the Centre for Arab Genomic Studies (CAGS) – March 2013.
It is unclear why the presence of an extra chromosome no. 21 occurs, but it can come from either the mother or father, however it is important to remember that it is no one’s ‘fault’ and nothing could have been done differently to prevent it happening. Down Syndrome occurs in all races, in all social classes and in all countries throughout the world. It can happen to anyone.
There are three type of Down Syndrome:
1. Trisomy 21 is the most common and accounts for about 95 percent of all cases. An extra chromosome gets replicated in every cell of the developing body.
2. Translocation accounts for about 3 percent of Down Syndrome cases. Here, the child is born with the usual 46 chromosomes but has a copy of chromosome 21 that attaches to another chromosome within the cell.
3. Mosaicism makes up about 2 percent of Down Syndrome cases. Babies born with this type of Down syndrome have some cells containing 46 chromosomes and some containing 47, resulting in fewer and less-severe symptoms.
Although people have negative preconceptions about what it means for someone to have Down Syndrome, many of those living with the condition grow up to lead long and fulfilling semi-independent. It is also important to acknowledge that although non-invasive prenatal testing for Down Syndrome is now widely available, even a positive diagnosis is only for suspected Down Syndrome - there is still a margin of error in the diagnosis, and it's possible to have a false positive.
Common myths about Down Syndrome
MYTH: "Down Syndrome is a disease"
Down syndrome is not a disease, but a genetic condition that occurs when there is the presence of an extra chromosome. People with Down syndrome are not ill and do not “suffer” from their condition.
MYTH: "People with Down Syndrome cannot learn or go to school"
While it is true that all people with the syndrome will have a varying degree of learning difficulty, the degree can vary dramatically. Most people with Down Syndrome will walk and talk and many will read and write, go to ordinary schools and lead fulfilling, independent lives.
MYTH: “People with Down syndrome don’t live very long”
Today, people with Down syndrome can look forward to a long life of 60 years plus.
MYTH: “Only older mothers have babies with Down syndrome”
Although older mothers have a higher individual chance of having a baby with Down Syndrome, statistically more babies with Down Syndrome are born to younger mothers, reflecting the higher birth rate in this group.
MYTH: “People with Down syndrome cannot achieve normal life goals”
With the right support, they can. Most people with Down syndrome learn to walk and talk, and many are now attending mainstream schools, passing GCSEs and living full, semi-independent adult lives.
MYTH: “People with Down syndrome all look the same”
There are certain physical characteristics that can occur. People with Down syndrome can have all of them or none. A person with Down syndrome will always look more like his or her close family than someone else with the condition.