WORLD Spina Bifida and Hydrocephalus Day (WSBHD), celebrated annually on Oct 25, was established by the International Federation of Spina Bifida and Hydrocephalus in 2011 with the aim of raising awareness and understanding of Spina Bifida and Hydrocephalus (SBH), as well as advocate and promote the rights of persons with these conditions.
Spina bifida affects 0.11-1.87 per 1,000 live births in Malaysia. It causes malformation of the spine and spinal cord, which can lead to multiple medical complications such as hydrocephalus, varying degrees of paralysis, bowel and bladder incontinence, musculoskeletal issues and pressure sores.
Although doctors can prognosticate the walking ability of an individual with spina bifida based on the level of the spinal cord that is affected, it is not as easy to predict the associated medical complications.
Therefore, it is difficult to label any child with spina bifida with a certain degree of disability because their limitations are a combination of factors.
The Spina Bifida Association of Malaysia (SIBIAM), was incorporated in 2007, focusing on awareness campaigns to empower parents with knowledge about spina bifida and hydrocephalus.
SIBIAM president, Professor Dr Amaramalar Selvi Naicker-Naysaduray, says individuals with spina bifida need a holistic management; not just from the hospital, but family and friends, policies that support their needs and accessibility, opportunities for education and jobs, and non-governmental organisations that can focus on their cause.
"With families, healthcare workers and SIBIAM working together, it is very likely they will have a good quality of life."
In 2018, the District Action Group for Spina Bifida and Hydrocephalus (DASH), was set up as a special action group within Rotary District 3300 and has been instrumental in advancing SIBIAM's cause.
DASH chairperson, Dr Kribanandan GN says the goal was to bring together like-minded Rotarians to assist SBH individuals through awareness campaigns leveraging on critical factors - SIBIAM's network of doctors and practitioners and the strong structure of clubs within the Rotary movement.
World Spina Bifida and Hydrocephalus Day was marked locally via a virtual event recently.
The highlight of the event was a talent competition titled "Celebrate Abilities with Diversity" which showcased the wide range of talents within the Malaysian SBH community.
Nur Airish Hani Roszaidi, 10, clinched the first prize of RM500 for her category with a drawing of the National Monument alongside the spina bifida ribbon. Meanwhile, Form 4 student Jonathan Lee Jing Yik came out victorious among the teens with his rendition of the popular Chinese song "Friends" by Emil Chau.
Audio engineer Kenneth D'Cruz, 33, wowed his way to the top of the over 18 category with a heartfelt cover of Rascal Flatt's "Bless The Broken Road".
For more information, go to www.sibiam.my or www.facebook.com/DASH3300
