Forum place (NEW!)
Source: Smile train website
From May 29th through June 7th students at the International Medical University (IMU), Malaysia held a fund-raiser called "Everlasting Smile". A booth was set up for the event with materials regarding the embryological aspect of cleft lip and palate, the problems faced by these children and testimonies written by people affected by cleft. During the hours of 10am until 3:30pm students distributed newsletters from the Cleft Lip and Palate Association of Malaysia (CLAPAM) as well as brochures prepared by their committee and sold items partially sponsored by a student's mother. Potential donors were also able to screen a video provided by the Smile Train.
In addition to the booth, the students held a "Best Smile Competition" for any donor who made a donation of RM3, Malaysian Ringgit equal to approx. 80¢ US, or more. On the last day of the event, the students screened the movie "Smile" and charged an entrance fee of RM1 to give people insight into the challenges faced by cleft-affected individuals in developing countries. The response was overwhelming, stated President of the event Cindy Wong, "We initially set a target of RM1000 (approx $273 US), but we received RM3131 (approx $855 US)." Cindy organized the event as committee President with Co-President Soo Hui Fang, Secretary Low Lee Ling, Vice Secretary Low Chee Koon, Treasurer Puteri Zatil Aqmar Binti Mohd Hanapi and Vice Treasurer Yap Sui Ling.
The Smile Train would like to thank all of the IMU students who organized the "Everlasting Smile" event, along with all of the donors who made the event a success and helped bring smiles to the faces of poor children around the world!
The Star, Lifestyle, Wednesday November 16, 2005
By PANG HIN YUE
After overcoming her initial shock and grief that her fourth child, Salman Saad Zainal Azhar, was born with deformities to his upper lip and palate, Zuraini Ghazali went about finding ways to feed him. His congenital condition – cleft lip and palate – made it impossible for him to latch on to a teat to drink milk.
“At that time, special feeding bottles were not available. I had to use a spoon,” Zuraini recalls.
At one month old, Salman Saad had his first surgery to repair his upper lip which looked as though it was torn into two –hence the name, bilateral cleft lip. More surgeries followed as his palate – the top part of the inside of the mouth – was also affected, which in turn affected his speech and hearing, among others.
Now, Salman Saad, 14, is about to go under the knife for the fifth time for further fine-tuning.
A team of dedicated, multi-disciplinary experts is available at the Combined Cleft Clinic at University Malaya Medical Centre (UMMC).
At hand to offer their expertise are doctors in the respective fields of plastic surgery, maxillofacial surgery (to restructure bones and to assist in lip repair), and in some instances where the skull of the brain also requires reconstruction, surgeons trained in craniofacial surgery are roped in.
The team also comprises orthodontists (to correct the position of the teeth) as well as ENT and plastic surgeons, paediatricians (to provide genetic counselling and healthcare), psychologists and speech experts.
The one-stop clinic offers free consultation to first-time patients and it is available every first Friday of the month, says Professor Dr Loga Baskaran, a clinical linguistics specialist who is one of the team members. A fee will be charged for subsequent visits and the amount depends on the socio-economic position of the patient.
“We have the specialists and there is hope for every one who is born with cleft lip and palate. Regardless of their age, with corrective surgery, counselling and speech therapy, they can lead a life without the stigma of looking and talking differently,” explains Dr Loga.
A group of parents and professionals formed a support group and had it registered with the Registrar of Societies (ROS) in 1993 as Cleft Lip and Palate Association of Malaysia (Clapam).
With the support of UMMC’s Combined Cleft Clinic, Clapam endeavours to raise public awareness that help is available. They will jointly hold a bi-lingual public forum on Nov 19 at Balai Ungku Aziz, UM’s Faculty of Dentistry. Admission is free.
In a recent population-based study conducted in the Kinta district of Perak, Associate Professor Dr Thong Meow Keong, head of genetic services in UMMC, and his research team discovered that for every 1,000 births, two are born with cleft lip and palate.
Dr Thong added: “In Malaysia, out of 600,00 births per annum, we expect 1,200 babies born with cleft lip and palate every year.”
Overall, Malaysia’s rate of incidence is considered to be average compared with other Asian countries which have a ratio of 1 in 600. Native Americans appear to have the highest rate with 1 in 100. On the end of the spectrum, only 1 in 2,500 Africans have such anomalies.
Dr Thong, a consultant paediatrician and clinical geneticist, notes that there are three sub-groups: 25% have just cleft lip, 45% have clefts on the lip and palate, and 30% have only cleft palate.
Palate problems can affect the ear, nose and throat as well as overall facial growth and speech development. Till today there are no specific gene tests that can be used to diagnose isolated cleft lip and palate.
With technology and increased knowledge, the chances of leading a normal life for those born with cleft lip and palate are good. Most importantly, stresses Dr Thong, “it is not a lethal condition.”
- Copyright reserved. CLAPAM 2006 -