03/10/2020
National Cerebral Palsy DAY -NNMF (Nagai Narayanji Memorial Foundation) and Children Orthopaedic Care Institute,Nagpur
" REMOVE THE BARRIERS AND SEE THEM FLYING
Cerebral Palsy is an unwelcome global phenomenon and is the most common movement disorder seen in children worldwide.
Cerebral palsy has been described in the society centuries ago. It's manifestations range from mild to severe symptoms depending on the amount of brain damage encountered by the affected individual before, during or after birth.
It's prevalence is about 2 to 3 in every 1000 children worldwide. However, in actual sense it is expected to be more than what is accounted specially in a developing country like India.
Cerebral palsy is caused by injury to neonatal brain before, during or immediately after birth.
The manifestations include muscle stiffness, joint stiffness, deformities ,problems in balance and coordination, difficulty in every day activities like sitting, eating, walking.
The parents have to move around various facilities to get proper treatment for their child throughout his developmental years, this puts lots of burden on them physically, financially and emotionally eventually forcing them to discontinue treatment during crucial developmental years of their child.
Keeping this fact in mind Team NNMF is making an effort to provide multidisciplinary team rehabilitation services to the affected individual and his family. ....including physiotherapy, occupational therapy and speech therapy. ...all under one roof and free of cost
Inspite of being so widespread in the society since centuries, the stigma and myths associated with this disabling condition still prevails. This negative perception about CP results in marginalising these children from society and ultimately depriving them from getting adequate medical and rehabilitation treatment they deserve.
However good news is that with continuous advances in medical and rehabilitation measures, individuals with cerebral palsy can be helped to lead a life with less miseries.
3rd October every year is celebrated as National cerebral palsy day and 6th October is celebrated as World cerebral palsy day worldwide with the soul aim of creating more awareness about this condition.
The ICF model proposed by WHO in 2001 is developed to encourage holistic approach while treating individuals with CP so that we get their maximum participation in society.
Along with government machineries a lot of parents associations and NGOs are actively engaged in holistic rehabilitation of individuals with CP.
Nagpur based NGO NNMF( Nagai Narayanji Memorial Foundation) and Children Orthopaedic Care Institute are working together with the mission of rehabilitating children with CP for the last 15 years .
Established by individuals striving for childhood disability management, under the presidentship of Peadiatric Orthopaedic Surgeon from Nagpur Dr.Viraj Shingade , the NGO has served thousands of children with cerebral palsy from various parts of India ,especially the underprivileged children from inaccessible. ,rural parts of India including Maharashtra. ,Chattisgarh, Orissa ,Madhya pradesh.
NNMF and Children Orthopaedic Care Institute has been conducting free screening camps in various parts of rural India for more than 15 years. It has screened more than 10000 children with CP who were deprived of expert medical care.
A large number of children (more than 3000) required surgical correction for their various deformities of upper limbs and lower limbs which were done during free surgical camps of NNMF and Children Orthopaedic Care Institute. The surgical team ,headed by Dr.Viraj Shingade along with the chief paediatric aneasthetist Dr.Rashmi Shingade , Dr.Deepali Mandalik , Dr.,Suhas Ambade , Dr.Manish Dhoke and Dr.Sandeep Maitreya perform extensive surgeries during the camp.
Cerebral palsy has associated problems like convulsions which can hamper normal development if not addressed properly in time. Also there can be various learning disorders in the child which may not be obvious.To address associated neurological and developmental problems ,specialists are delivering services at regular intervals at the foundation .These include paediatric neurologists Dr.Amarjeet Wagh and Dr.Vinit Wankhede along with developmental paediatrician Dr.Dinesh Saroj.
Free Orthotic appliances distribution and follow up camps are also conducted. Orthotic appliances are useful to prevent deformities ,maintain optimum muscle length and joint position, and enhance the benefits obtained by surgical correction. Orthotic department is managed by Mr .Sanjay Ingale and his assistant technicians, who have expertise in making effective ,tailormade orthotic appliances for the CP children throughout their developing years.
The spastic children are given free rehabilitation services which are comprehensive in nature. ....including physiotherapy, occupational therapy and language and communication skills.
Deepa ,a mother of twins, Vicky and Micky, both suffering from cerebral palsy ,expressess her gratitude to the NNMF rehabilitation team. ...helping her in all round development of her children.
The Rehabilitation Department headed by Dr. Alpana Muley is taking painstaking efforts for the spastic children day and night.The team comprising of physios Prajakta Thakare ,Renuka Naik and Rajpal along with their occupational therapy colleagues Tejal baghele and Anita Pahuja assisted by young therapists Tejaswini Jadhav and Shraddha Karnewar are constantly striving to provide effective solutions to achieve optimal development in children coming to their clinic. . The speech and language development team comprising of Satyam Banjare and Shubhangi Waghmare have helped kids in expressing themselves through words and sign language bringing a smile on faces of numerous parents who were waiting to hear their kids communicating with them. ...expressing their desires. ..singing sweet nursery rhymes. The rehabilitation team is actively engaged in counselling parents in their everyday challenges during the developmental years of their children.
In these testing times of COVID -19 , telehealth consultation has opened up new horizons to deliver rehabilitation services to children with cerebral palsy.The rehabilitation team of NNMF is reaching out to their children and families as they are not able to reach the rehabilitation center. The rehabilitation team realises the importance of parents training in giving effective home therapy to children so that they do not loose the benefits achieved by therapeutic interventions. The pandemic like COVID -19 has been a real eye opener .
Rohit ,an enthusiastic teenager from Gondia had to stop attending school as he gradually developed difficulty in walking with increased stiffness in his muscles and joints of both legs . With increasing height and weight ,his parents were unable to carry him to school eveyday. However the medical and rehabilitation team of NNMF and Chilldren Orthopaedic care Institute offered them a helping hand by operating on his legs free of cost,during one of their surgery camps . Rohit after months of rigorous exercise therapy at center and home is walking with minimal support and going back to school. He now faces the world with more confidence.
There are numerous such stories of children with CP where team NNMF and Children Orthopaedic care Institute has made an impact on their lives. In the year 2019-20 more than 3000 spastic children were benefitted by free rehabilitation services provided by us.
To achieve maximum participation of CP children the rehabilitation team celebrates important occasions like festivals ,organising events like fancy dress competitions ,engaging children in drawing competitions to encourage their planning skills, interacting with environment. The parents are the frontline organisers in these events. The NNMF administrative team comprising of Priyanka Mangrulkar , Sandeep Nimje and their subordinates leave no stone unturned to give the children the happiest moments of their lives.
This herculean task of NNMF is supported by many philanthropists and well wishers from society. The foundation owes a deep sense of gratitude to them.
However the magnitude of CP is large in society and there is still a long way to go before each and every child is reached.
The foundation makes a humble request to all sections of society to come forward and join hands in this mammoth task.
Some common misunderstandings about Cerebral palsy:
• MYTH ;It is a form of polio……
TRUTH: It is a group of movement disorders caused by brain damage of the child before ,during or after birth
• MYTH : All CP individuals are intellectually challenged…….
TRUTH ; there are countless examples of individuals with CP who have excelled academically and professionally
• MYTH :Medicines cure CP completely………
TRUTH : CP cannot be cured completely ,its negative effects can be reduced to great extent by various interventions right from birth…..medicines have a limited role in reducing some associated problems.
• MYTH : A child with CP will recover with age without any intervention ….
TRUTH : This attitude of wait and watch might lose the crucial time period of child’s development.
Parents should take advantage of early diagnosis and early intervention facilities available with medical fraternity. Earlier the therapy started it is better for the child.
•MYTH :Surgery will permanently cure cerebral palsy disability or surgery will cause permanent damage to joints and muscles
TRUTH : ..Surgery plays major role in rehabilitation of spastic child. Surgical interventions in cerebral palsy are to be planned carefully by a specialist and has to be performed by the specialist doctors to get best possible outcomes.
• MYTH : CP persons can not come in mainstream….……..
TRUTH :nothing can stop him or her from participating in society. They just need opportunity and empathy
If society comes forward and help these children removing the barriers one can see many children fly new heights.
