JOHOR BARU: The World Spina Bifida and Hydrocephalus Day was marked with an awareness course held at the auditorium of Hospital Sultan Ismail (HSI).
This year the World Spina Bifida and Hydrocephalus Day is themed "Elevate your Voice to the Path Towards Independence."
The one-day event was attended by 150 healthcare providers comprising doctors, nurses, therapists and 50 spina bifida patients and their family members from all Johor districts.
Also present were a number of rotarians from various districts.
The event was officiated by HSI deputy director Dr Surya Marsom who represented the hospital director.
She thanked the Department of Rehabilitation Medicine HSI, Spina Bifida Association of Malaysia (SIBIAM),District Action Group for Spina Bifida and Hydrocephalus (DASH) and rotary clubs for their advocacy, teamwork and support.
"I am glad that eminent specialists from various hospitals spent their time to share their knowledge not just to hospital staff but also patients and parents," said Dr Surya.
She said that this programme was to create greater awareness on spina bifida and is pleased that SIBIAM had shared training templates prepared by eminent experts in the field of spina bifida to ensure sustainability of future education and training.
"HSI would continue to support in terms of expertise and space for these educational community awareness campaigns," she added.
In her address, SIBIAM president Professor Dr Amaramalar Selvi Naicker-Naysaduray said people with spina bifida need holistic healthcare, accessibility, education and job opportunities.
DASH chairperson and rotarian Dr G. N. Kribanandan envisaged that stronger networks can be built between healthcare providers, rotarians and the community to create greater awareness about spina bifida.
There was a comprehensive series of lectures by a multidisciplinary team of specialists.
Dr Tajul Ariffin Tajudin, paediatric neurologist at KPJ Puteri Specialist Hospital stressed that spina bifida is a birth defect that occurs when the spine and the spinal cord do not form properly.
Dr Sharon Casilda Theophilus, a neurosurgeon at the KPJ Johor Specialist Hospital shared about the surgical repair for a baby born with spina bifida and management of hydrocephalus where there is excess fluid in the brain.
Another speaker Dr Fadhli Miskon, Foot and Ankle orthopaedic surgeon at HSI explored on foot deformities that can occur as a complication of spina bifida.
Dr Chern Phei Ming, a rehabilitation physician at Pusat Rehabilitasi Cheras shared her experience on the rehabilitation program required for children with spina bifida.
Ng Chao Feng, a physiotherapist at HSI demonstrated some home exercises that were beneficial for people with spina bifida.
Johor deputy director of special education Siti Jamilah Samsuddin explained about education options while Abu Umamah Abd Rahim from the Human Resource Development Corporation touched on training programs.
Participants were also engaged in interactive games and education session for children with spina bifida and their parents.
Dr Sharon Anne Khor, Johor head of rehabilitation medicine services conducted a moderation session for children with spina bifida.
"The children agreed that they had learnt a lot from the teaching sessions."
"One young boy said that the demonstration of bladder catheterisation by a nurse on the mannequin made him more confident in doing self-catheterisation."
A number of children shared about the challenges they face in school such as coping with lessons while having to manage their bladder and bowel movement.