With Cerebral palsy, a brain disorder which affects mostly children, becoming the commonest cause of childhood disability in India, October 3, 2010 will be observed as the first ‘National Cerebral Palsy Day’ by doctors, rehab professionals, parents and people engaged in prevention and management of this impairment.
Indian Academy of Cerebral Palsy, an academic body formed by doctors and rehab professionals from across the country working for the cause of Cerebral Palsy, has taken this decision recently. The theme for first ever Cerebral Palsy Day will be “Demystifying Cerebral Palsy by action through Awareness & Advocacy”.
Cerebral Palsy, which mainly occurs due to interference in brain development, causes difficulty in movement, speech and sometimes learning of the children. This occurs either in the womb, or during birth, or even after two years of birth during which rapid development of the brain takes place.
There are an estimated over 25 lakh children and people in India with Cerebral Palsy. The incidence of Cerebral Palsy is up to 3 cases per 1000 live births.
“Cerebral Palsy has become an added responsibility for many persons and their families due to lack of awareness, even though several interventions are available to improve quality of life of persons & their families with the developmental disability. Incidence of Cerebral palsy is not decreasing in spite of improved health care in India & world over as much as expected especially in the rural areas and this is the high time that we work proactively to help the persons & their families by providing proper information about the available management options &training in coping with the impairment. The observation of National Cerebral palsy Day will help us in spreading awareness about this relatively lesser known but highly prevalent disorder,” said Dr. Ashok N. Johari, President IACP.
Dr. Johari said that IACP will observe National Cerebral Palsy Day on October 3 which is the birthday of the organization’s founder President late Dr.Perin Kavas Mullaferoze, who pioneered team approach for managing Cerebral Palsy in India.
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“There are both social and medical myths prevalent in India regarding Cerebral palsy. We need to educate people in dispelling them. The greatest myth is that cerebral palsy is a disease and it is not curable and is caused by medical negligence. We need to drive home the scientific truth that it is a developmental difference resulting in difficulty in movement predominantly & the goal is to improve quality of life & not fix the disability or normalize them. With appropriate & timely help and assistive devises many can lead a near normal life. We need to make people realize that disability needs to be tackled with a care model of health and not a cure model. Energetic public health education is the only way out,” said Dr. G Shashikala, General Secretary, IACP.With an objective to increase awareness and knowledge on the subject for better services for persons with Cerebral Palsy , the first Cerebral Palsy Day will be celebrated nationally during which IACP members will conduct several activities such as awareness camps, painting, sports and cultural activities for persons with Cerebral Palsy at their respective cities and hospitals.
Besides this, informative exhibitions, training workshops and round table discussion will be held with participation of children, parents, professionals and public.
“This initiative by IACP will also serve as an advocacy for government policy to deal with cerebral palsy which has emerged as a difficult challenge to our healthcare system. There is more awareness about polio. But the fact is that polio challenge is simpler & almost wiped out in India today, whereas we see 20-30 patients with cerebral palsy with all its complicated social as well as health demands every day,” added Dr. Johari.
A recent study has found that in 10 to 20 percent of patients, cerebral palsy is acquired after birth, mainly because of brain lesions caused by bacterial meningitis, viral encephalitis, accident or physical assault.Spastic cerebral palsy is the most common type, occurring in 70 to 80 percent of all cases. In some cases it affects one side of the body due to a brain pathology in opposite side In few spastic cases, all four limbs are affected equally.
The disability can also affect one’s skills such as writing, typing, using scissors as well as balancing the body while walking or standing. Some cannot even hold objects, eat or drink without help & may have fits.
About IACP
The Indian Academy of Cerebral Palsy, headquartered in Hyderabad, is a national body consisting of pioneers drawn from different regions and specialties across the country. IACP was formed in 2005 and presently has over 500 professionals as its members. With decades of work behind them, these members share a common futuristic vision to contribute to the welfare of persons with cerebral palsy and related neuro developmental disabilities and their families at all socio ecological levels.
IACP provides a platform for interaction, networking, participating in nation wide on going education, research, community initiatives and advocacy efforts apart from learning the latest advances in the field of Developmental Sciences via conferences, Continuing Education Programs, publications and projects for members drawn from all specialties of Medicine, Therapy, Rehabilitation, Special Education, Psychology, Mainstream Education & Medico Social Work.