October 7 - World Cerebral Palsy (CP) Day:

When motor functions are impaired

An estimated 40,000 children are diagnosed with Cerebral Palsy in Sri Lanka:

by Carol Aloysius

Cerebral Palsy (CP) is the most debilitating neurological disorder that afflict children from infancy or early childhood, permanently affecting their body movement and muscle coordination. In Sri Lanka, an estimated 40,000 or more children have been diagnosed with the disease, with over 70% of them having spastic Cerebral Palsy. However, a single Centre to provide them with the support they need was only set up four years ago when Dr. Gopi Kitnasamy, BSc MCSP(UK), MIMDTP(UK), Chartered Physiotherapist, Certified Paediatric Bobath Therapist and Founder/Chairman Cerebral Palsy Lanka Foundation (CPFL), came up with his innovative project ‘The Dream’ Centre. This Centre along with two others set up later, now caters to all the needs of children sidelined for years because of CP, under one roof.

Here Dr Kitnasamy talks to Sunday Observer about the disorder, how it is caused, and reveals his dreams of making the world a better place for all Lankan children who are afflicted by this debilitating condition. 

Excerpts …

Q: World Cerebral Palsy Day was observed early this week. What is the significance of this day?

A: World Cerebral Palsy Day is an innovative project launched in 2012 by Cerebral Palsy Alliance (Australia) and United Cerebral Palsy (USA). It is supported by over 270 Cerebral Palsy service organisations, universities, parent groups, research institutions, student groups, schools and children’s hospitals from 46 countries. More than an awareness day, the project aims to gather ideas from people with Cerebral Palsy and their supporters, and make the best of those ideas a reality. The theme is ‘Change My World in One Minute’. Cerebral Palsy Lanka Foundation (CPLF), which represents persons with Cerebral Palsy in Sri Lanka has been the partner of World CP Day from the launch of this project.

Q: So what is Cerebral Palsy and how is it caused?

A: The term ‘cerebral’ refers to the brain; palsy refers to the loss or impairment of motor function. Cerebral Palsy is a group of neurological disorders that appear in infancy or early childhood and permanently affects body movement and muscle coordination. Cerebral Palsy is caused by damage to or abnormalities inside the developing brain that disrupt the brain’s ability to control movement and maintain posture and balance. Cause of Cerebral Palsy is unknown in many cases, but possible causes include genetic abnormalities, congenital brain malformations, maternal infections or fevers, or fetal injury like brain damage.

Q: Any other contributory factors?

A: Low birth weight and premature birth, multiple births, infections during pregnancy, blood type incompatibility between mother and child, exposure to toxic substances, mothers with thyroid abnormalities, intellectual disability, excess protein in the urine, or seizures, breech presentation, complicated labour and delivery, small for gestational age (babies born smaller than normal), having Seizures, low Apgar score (rating that reflects a newborn’s physical health) and child having Jaundice a yellowing of the skin or whites of the eyes of the newborn) are the risky conditions for Cerebral Palsy.  

Q: Is it a genetic disorder as well? Can it be prevented? 

A: Cerebral Palsy related to genetic abnormalities cannot be prevented, but a few of the risk factors for congenital Cerebral Palsy can be managed or avoided. For example, Rubella, or German measles, is preventable if women are vaccinated against the disease before becoming pregnant. Rh incompatibilities can also be managed early in pregnancy.  

Q: What is Acquired CP?

A: Acquired Cerebral Palsy, is often due to head injury, is often preventable using common safety tactics, such as using car seats for infants and toddlers.

Q: Who are the most vulnerable groups?

A: Cerebral Palsy is the most common motor disability in childhood and this is more common among boys than girls. Some 70% of the children identified with Cerebral Palsy had spastic Cerebral Palsy. More than 12% walked using a hand-held mobility device and more than 40% had limited or no-walking ability. More than 40% of children with Cerebral Palsy have intellectual disability, 35% have epilepsy, and more than 15% have vision impairment. Therefore we should make the community aware of this condition beforehand.”

Q: What are the implications of this disorder? Is it a lifelong condition or can it be reversed with proper treatment?

A: Cerebral Palsy is a life-long physical disability. It is a condition that is permanent, but not unchanging.

Q: Is there a cure? Can surgery or therapy at least reduce the symptoms?

A: There is no known cure for this condition but its effects can be greatly mitigated by the delivery of appropriate therapeutic interventions towards such patients to help them lead an independent life.

Q: How many victims of this condition are there in Sri Lanka and globally?

A: Globally, more than 17 million people have Cerebral Palsy and one out of two people with Cerebral Palsy lives in chronic pain; one out of three cannot walk; one out of five cannot talk; one out of 10 has a severe vision impairment and one out of 25 has a severe hearing impairment. In Sri Lanka there is no official count as yet, but it’s estimated that there are 40,000 or more and the numbers are high and rising.

Q: Is it because this disorder is spreading for some reasons or because of more detections?

A: It is not a disease and it’s not contagious. More detections have been made due to our awareness raising programs islandwide. The media has also helped and we are grateful for their support.

Q: What are the symptoms parents must look for to detect this condition in children?

 A: The lack of muscle coordination when performing voluntary movements; stiff or tight muscles and exaggerated reflexes (spasticity); weakness in one or more arm or leg; walking on the toes; variations in muscle tone, either too stiff or too floppy; excessive drooling or difficulties swallowing or speaking; shaking (tremor) or random involuntary movements; delays in reaching motor skill milestones and difficulty with precise movements such as writing or buttoning a shirt.

Q: What prompted you to set it up a place like the Dream Cenre?

A: The CPLF is a non-profit organization set up primarily to assist persons affected by CP, and to support their families. CPLF is the first and the only organization in Sri Lanka established specifically for people with CP. CPLF aims on becoming a centre of excellence, which provides world class treatment, services and programs supporting those with CP, their carers and other stakeholders. The foundation also aims at raising awareness, building long-term capacity and educating the public and other stakeholder groups on CP and other disabilities. The Dream Centre is the resource and the rehabilitation centre of CPLF established to provide educational and therapeutic services (Physio, Occupational and Speech therapy) for the children with Cerebral Palsy and other associated movement disorders. There are three centres in Colombo (Wattala, Moratuwa and Battaramulla) and the vision of CPLF is to start at least one such centre in each district of Sri Lanka. We had been searching for a similar school for my son and that’s how everything happened.

Q: What kind of work do you do there? What have you achieved so far in reaching your goals?

A: Apart from the educational and therapeutic services, we train parents to help their children to become more independent in performing basic functions. We also developed our information services, to a new level when on March 8, 2012, we launched Cerebral Palsy Information Services via Mobitel in all three languages. This was a first of its kind of information service in the World for CP. Other highlights include setting up two more centers at Moratuwa, on May 8, 2012 and one at Battaramulla recently. To raise islandwide awareness , we also organised the country’s first ever National Cerebral Palsy Awareness week . It was organized by CPLF and camps were conducted in 6 districts from May 8 to June 2, 2012.

Q: Any publications for those who might want to know more about the disorder?

A: On June 18, 2013, CPLF published the Sinhala and Tamil versions of ‘You and Your Disabled Child’ book in Sri Lanka. This is a common guidance for parents of special children. We will be publishing a special book on Cerebral Palsy soon. 

Q: Social media using mobile phones is now becoming very popular as a means of communicating messages. Your comments?

A: CPLF created the world’s first Mobile App for Cerebral Palsy and launched it on October 4, 2013 to create more awareness about CP .

Q: What is the most recent innovation by way of recreation to enable children with CP to enjoy outdoor activities like other children?

A: Last year, on September 29, we launched the First Inclusive Park in Sri Lanka with the support of World Health Organization (WHO), Urban Development Authority (UDA) and Colombo Municipal Council (CMC) at the Viharamahadevi Park, Colombo. Children on wheel chairs can now enjoy going on swings in this park using this wheelchair swing specially designed for that purpose.

Q: Any more plans to give them mobility?

A: In February this year, we launched the 1000 Wheelchairs Project in collaboration with Wheels for Wheels Foundation and MJF Charitable Foundation. The funds for these special Paediatric wheelchairs were fundraised by the Around the Pearl project. These wheelchairs were distributed to the children with CP and other disabilities in 10 districts of Sri Lanka. Our goal is to help all the children in need of these wheelchairs in every district.

Q: Your message?

A: Cerebral Palsy is the most common motor disability in childhood and because of this community awareness raising is very important.. Parents of children with CP should know that CPFL provides services which will help such children to live a near normal life. For more information they can use our website: www.cplanka.lk or www.cplanka.org