PETALING JAYA: About 1.5 infants per 1,000 live births in Malaysia are affected by Spina Bifida (SB), which is a spinal column defect.
Spina Bifida Association of Malaysia (Sibiam) vice-president Prof Dr Amara Naicker said the is an estimation by the voluntary non-profit organisation which aids patients with SB. She said a national registry should hold records on such cases.
Spina Bifida is a birth defect affecting the spinal column, which limits the mobility of the patient and can lead to paralysis.
While a cure is not known, there are treatments to keep the condition in check. Besides mobility issues, a patient with SB also suffer from issues related to bowel and bladder control.
“Most people have a good idea but there are some who really don’t know about it,” Amara said. “It is not a 100% thing that everybody who has a diagnosis of SB is aware of it.”
The awareness level of patients in the Klang Valley is better than those in the rural areas, She said some, especially in the smaller towns, choose not to pursue treatment as that would incur transportation costs and many hospital visits.
A SB patient will need between RM420 and RM1,500 a month to deal with their conditions. This includes cost of diapers, catheters, medications, therapy sessions, walking frames and other form of aids.
On welfare aids, she said the government could do more by subsidising these items instead of providing the usual monthly monetary aids disbursed through state welfare departments.
“We still have a certain number of Spina Bifida kids not getting what they need,” she said.
Besides physical symptoms, some patients are also prone to falling into depression, making the need for a nurse who could double as a counsellor crucial.
Amara also called for government supported researches such as a health economic research to be carried out. She added that schools should have the basic amenities in place to enable students with mobility issues to move around.
