Down syndrome: the need for a surveillance programme
posted in - General, - UK Doc |Guest blogger, UK Doc writes:
Down syndrome is a chromosomal disorder characterised by mental retardation and Mongoloid facial features. People with Down syndrome have a high prevalence of many associated diseases including congenital heart problems, thyroid disorder, eye, ear, nose and throat (ENT) problems etc.
People with Down syndrome are often disadvantaged for many reasons. One of the biggest reasons is our society’s low expectation of how well they should perform. Often when speaking to parents of Down children, I get replies like: “He/she is not too great but what do you expect, the kid has Down.” So, even parents (and sadly sometimes health professionals) have the idea that they ought not to do too well. With such low expectation, many reversible/treatable conditions are overlooked and negligently put down to Down.
Using ENT as an example, Down children have every right to enjoy the best of their hearing. They invariably have glue ears which are treatable, and they are likely to develop progressive sensorineural hearing loss which is aidable. Their learning difficulty can only be worsened by their hearing problems and society will further disregard them as mentally retarded “because they have Down”. Likewise they have a higher prevalence of obstructive sleep apnoea (30-100%, depends on how hard you look for it), and the nocturnal hypoxia and unrefreshed sleep can only worsen their behavioural problems (and cardiac problem/pulmonary hypertension etc), straining their relationship with their carers, hence further disadvantage this group of very lovely children.
The UK Down’s Syndrome Medical Interest Group (DSMIG) compromises a network of doctors whose aim is to ensure equitable provision of medical care for all people with Down’s syndrome in the UK and Republic of Ireland. Nonetheless, I thought the information provided in their website may be relevant to Malaysian health care providers and public.
Among the information provided is a list of guidelines for basic medical surveillance. Because of the low expectation and high prevalence of certain disorders, we cannot rely solely upon parents or GPs to bring their children for tests when they suspect problems. A pro-active surveillance programme is therefore necessary because people with Down syndrome have every right as a human being to enjoy the best of their health and the best quality of lives.
Addendum
Malaysian links (from the MMR’s Support and Society links):
Kiwanis Down Syndrome Foundation
Malaysian Down Syndrome Society
Last 5 posts by UK Doc
- Is MOH oblivious of the Occupational Health interest of its junior employees? - September 28th, 2006
- Drooling..... - August 2nd, 2006
- Oral cancer prevention: to screen or to educate? - June 8th, 2006
- How can we improve survival of cancer but not its mortality rate? - May 27th, 2006
- Troubled times for International Medical Graduates in UK – Part II - May 6th, 2006
