Down Syndrome is a genetic condition that is often misunderstood in the Filipino community - here is a beginner's guide to help you separate fact from fiction.
There are a dozen-and-one stigma around Down Syndrome that prey on a Filipino household like the proverbial elephant in the room.
Due to deeply-entrenched social mores, a Filipino family with a child who has Down Syndrome has to confront two things for the rest of their lives: prejudice and ignorance.
Prejudice comes with the accepted - but false - wisdom that there is only one type of Down Syndrome and that very little can be done to improve the adult life of a D.S. child.
On the contrary, there are three different types, an explanation of which is outside the scope of this article, but they are: Trisomy 21, Mosaic Down Syndrome, and Translocation Down Syndrome.
Second, active monitoring and management of the child’s physical, intellectual and emotional well-being during their formative years can make a very big difference to their future. That is why families and friends are encouraged to devote as much as they can to supporting a child with D.S. early on to better equip them in their adult years.
So, with those two myths busted, here are the basic facts you need to know.
Children with Down Syndrome have lower immunity than the general population so it is vital that common medical ailments, like colds and other infections, are promptly attended to so they do not develop into more serious health issues.
Other medical issues that can develop are:
- Gastrointestinal tract problems, constipation (due to low muscle tone) and coeliac disease (intolerance to gluten)
- Over-active or under-active thyroid gland which causes lethargy, lack of concentration, weight gain, memory impairment and dry skin
- Leukemia; a chance of 1 in 100 children usually between the ages of one and four years
- Cold, coughs, sleep apnea and upper respiratory tract infection especially in early childhood due to their relatively narrow nasal passages.
- Hearing loss and ear infection as they tend to have narrower Eustachian tubes, causing middle ear problems.
- Visual defects such as Squints, Nystagmus, Cataracts and Keratoconus
- Gum disease and teeth problems
- A number of common skin and hair disorders, such as atopic dermatitis, fungal and yeast infections, impetigo, eczema and alopecia.
- Weight gain, partly as a result of metabolic differences so an active lifestyle is recommended for general health
- Neck problems - increased mobility of the atlanto-axial joint (the joint that connects the two neck bones directly under the skull known as the atlas and axis) means atlanto-axial instability. This can lead to dislocation of the two bones, which can cause compression of the spinal cord that will result in unsteadiness in walking and deterioration in bowel and bladder control.
- Reduced muscle tone and lax (loose) joints, especially the hip joint. Muscles can be strengthened through exercising, tickling your baby and by handling them appropriately in consultation with their physiotherapists.
With all these potential complications, what can be problematic is when you miss the warning signs. People with Down Syndrome do not always localise pain very well and may not clearly express the level of pain they are experiencing. Best advice? Do not underestimate the discomfort they may be feeling as the level of complaint may not adequately reflect the serious nature of a health or medical issues.
In short, children with Down Syndrome have competing physical and developmental needs, which is why:
1. they attend regular medical testing and various therapies
2. repetition and routine are a must
3. exercise is encouraged
4. they work closely with the specialists and early educators
5. they must have a balanced diet
6. they must have a happy environment
7. they must have a great support system especially the family
8. prevention and education are top priorities
9. there must be a lot of love and patience
10. people around them should be aware of their needs
The more time is devoted to understanding Down Syndrome, the better it is for children who have it.
And the more time is devoted to their future health, the better their chances of enjoying fulfilling and rewarding lives.
This article was inspired by, and parts extracted from, a Facebook post on Down Syndrome by Bless Salonga.