Cerebral Palsy and Where to get help on CP in India!

What is Cerebral Palsy?

Cerebral Palsy is a life-long physical disorder that affects people in many different ways. It covers a group of disorders affecting a child’s body movement, ability to control their muscles, coordination, reflexes, posture, balance and sometimes ability to communicate.

Cerebral palsy can be so severe that walking is difficult, or it can be so mild that it is unnoticeable to most people. Some children with cerebral palsy might have epilepsy, hearing, learning and visual difficulties and intellectual impairments. Cerebral palsy can’t be cured, but the problems it causes can be.

In India, around 3 in 1000 babies are born with Cerebral palsy.

How does one come to know if the child has CP?

There is no single test to diagnose cerebral palsy. It can’t be detected during pregnancy, but proper medical care during pregnancy and birth can help to reduce the risk. Babies with CP might have muscle stiffness and spasms, or they might have low muscle tone so that they feel ‘floppy’ when picked up.

The condition is often picked up when a baby or toddler doesn’t meet the expected developmental milestones for their age. So signs in babies to look out include:

-inability to hold up their heads at the right stage

-inability to sit up or rollover at the right stage

-difficulty feeding or swallowing

-using one side of their body in preference to the other

-Toddlers with cerebral palsy may not reach typical milestones such as walking by 18 months and speaking simple sentences by three years of age.

What are the causes of CEREBRAL PALSY during pregnancy?

• Maternal infections

Maternal infection is an infection acquired by the mother who then transmits the infection to the fetus. This transmission can occur via the placenta before delivery or via the birth canal during labor and delivery when the baby is exposed to maternal blood.

So it is very important to be away from infectious diseases and maintain hygiene during pregnancy. Any illness should be immediately reported to a doctor for timely treatment.

• Genetic Mutations

Cerebral Palsy is not a hereditary condition, but certain abnormal changes in the structure of genes can cause Cerebral Palsy. Risk factor of these abnormal genetic changes increases in marriages of close relatives.

• Fetal Hypoxia

Fetal hypoxia occurs when the fetus is deprived of an adequate supply of oxygen. It may be due to a variety of reasons such as cigarette smoke if either mother herself smokes during the pregnancy or is exposed to secondhand smoke. It can also be caused by various physical conditions like obstruction of air passage due to tangling of umbilical cord or direct injury to the fetus.

What are the possible treatment options for Cerebral Palsy?

1) Physiotherapy

2) Speech therapy, which can help with speech, eating and drinking difficulties

3) Management of hearing and vision impairment

4) Occupational therapy

5) Behavioural therapy or counselling

6) Special education

7) Medication

8) Surgery

How to get help with regards to Cerebral Palsy in India?

1.KOLKATA:

NGO:

Indian Institute of cerebral palsy-Kolkata- http://www.iicpindia.org/

+033 2401 3488/0240

2.MUMBAI:

NGO:

a.Cerebral Palsy Association of india-mumbai
  http://www.cpai.org.in/

098708 43937

b.POSAT Foundation
  www.posatfoundation.in

022 28956933

c. SAARTHI -School For Special Children

http://ridafoundation.org/current_project.html
Telephone Exchange Andheri - Kurla Road, behind SakiNaka, Saki Naka, Mumbai, Maharashtra 400072

HOSPITAL:

Kokilaben Hospital- Mumbai

https://www.kokilabenhospital.com/departments/clinicsatkh/cerebralpalsyclinic.html

3.BENGALURU:

NGO:

SAMA Foundation-Bengaluru

https://www.sama-foundation.org/

080 2314 6507

4.DELHI

NGO:Udaan-Delhi

https://udaan.org/

+91-11-26446978

5.CHENNAI

HOSPITAL:

Dr. Mehta's hospital- Chennai

https://mehtahospital.com/pediatrics/index.php/doctor/dr-k-nedunchelian/

+91-44-4227 1001 - 1005

Transpact is proudly associated with POSAT  and  SAARTHI -School For Special Children in Mumbai.

SAARTHI School for Special Children run by an NGO- Rida Foundation has been associated with Transpact Enterprises in the areas of Research and Product Development since 2013. The School provides integrated care comprising of academic, vocational, medical, and psychological support to the Special children of all sections of society, irrespective of financial considerations.

POSAT Foundation is a charitable organization working for the upliftment of physically and mentally challenged children and adults. The trust runs a rehab. center in Borivali West and special classes for challenged children in Rustomjee International School in Dahisar west and Balbharti School Kandivali West. The Rehab. Centre caters to the therapeutic management to the children suffering from cerebral palsy, mental retardation due to any cause including genetic conditions like Down syndrome, Autism Spectrum Disorder, ADHD and Learning Disability.

You can donate/ seek help from SAARTHI and  POSAT by dialing 097680 18786 and  022 28956933 respectively.

"Laws Protecting & Defending the Rights of the Special Need Population"

The Core Value of human rights mission underpins a system of basic freedoms that affords protection against the abuse of power and creates space for the development of the human spirit. Four Values- Dignity, Autonomy, Equality and Solidarity are of particular importance, both in general terms and in the context of Disability. Over 600 million people or approximately 10℅ of the world’s population have disabilities of one or other form. Over the last 2 decades, a drastic shift took place from an approach motivated by charity towards the disabled to one based on rights. The human rights perspective on disability means viewing people with disability as a subject and not as an object. It involves moving away from viewing people with disability as a problem towards viewing them as holders of rights. People with disabilities must be afforded freedom but also the means to take advantage of it. This can be done by providing relevant social support and in particular by respecting economics, social and cultural rights. The main human rights challenge is accommodating the difference of disability and making people with a disability visible within the system. 

Protection against Exploitation and Discrimination 

Disabled persons shall be protected against all exploitation, all regulations and all treatment of a discriminatory, abusive or degrading nature. 

Disabled persons shall be able to avail themselves of qualified legal aid that proves indispensable for the protection of their person and property. 

If judicial proceedings are instituted against them, the legal procedure applied shall take their physical and mental condition into account. 

Disabled persons, their families and communities shall be fully informed, by all appropriate means, of the rights contained in this Declaration. 

Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 

Of late, the Government of India has enacted a comprehensive piece of legislation namely. "the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995" to enforce the human rights of the disabled in pursuance of the UN Declaration. This law is an important landmark and will ensure equal opportunities for persons with disabilities and their full participation in the nation-building. The Act provides for both preventive and promotional aspects of rehabilitation like education, employment and vocational training, reservation, research-creation of barrier-free environment, rehabilitation for persons with a disability, unemployment allowance for the disabled, special insurance scheme for the employees and establishment of homes for persons with severe disability, etc. The Act has been enforced w.e.f. 07.02. 1996. All the state governments have been requested to take necessary steps for speedy implementation of the provisions of the Act. 

National Handicapped Finance and Development Corporation 

The Government has also set up a National Handicapped Finance and Development Corporation with an authorised share capital of Rs. 400 crores and paid-up share capital of Rs. 200 crores to make persons with disabilities productive and bring them into the mainstream of economic activity. 

National Human Rights Commission 

India being the signatories to the Human Rights Charter of the United Nations, constituted a high powered Commission namely, National Human Rights Commission to protect not only human rights of citizens but also of all categories of disabled persons. The Commission also deals with the violation of human rights as well as protection against exploitation, discrimination etc. 

In the absence of a proper forum to take up the cases on behalf of disabled persons before the National Human Rights Commission, the disabled have not so far taken any advantage from the Commission. Hence there is an urgent need that some organized groups of people should come forward to help the disabled in taking up their cases pertaining to violation of rights and exploitation and discrimination against them. 

The following measures for creating awareness and removing ignorance are suggested: 

(a) It is desirable that students from primary level should be introduced with the subject of the disability to enable them to develop better understanding towards the disablement over a period of time. Obviously, proper awareness and understanding is absolutely necessary to treat them on equal footing or at par with normal human beings and offer them the opportunities to unfold their capabilities without any exploitation and discrimination. 

(b) The Ministry of Social Justice and Empowerment should take up the matter with the Ministry of HRD; University Grant Commission (UGC) and All India Council of Technical Education (AICTE) regarding introduction of the subject on disability in all academic and professional courses in the country. This will also generate goodwill for the disablement, besides development of better understanding. 

(c) The NGOs can also play a vital role in removing ignorance and creating awareness about the rights of the disabled through constant efforts and programmes. 

(d) Mass media, like newspapers, radio, TV and films may also be helpful in dispelling the prejudices and discriminations against the education, placement and rehabilitation of the disabled by depicting success stories of the people with disabilities. 

Hence, this laws and rights help the Special Need Population of people with intellectual disabilities to live a meaningful, satisfying & productive life in our community. 

AN INSPIRING STORY ON WORLD DISABILITY DAY

International Day of People with Disabilities i.e. 3rd December is considered as an international observance day promoted by the United Nations since the year 1992. This day especially aims for promoting an understanding of disability issues or problems and to mobilize support for the moment of dignity, the well-being of people and the rights of the people with disabilities. This day also looks forward to increasing the awareness of the gins to be derived from the integration of persons with their disabilities in every aspect of cultural, political, economic and social life.

As we talk about Disability and dreams, here's a question for all. Can you imagine someone whose legs have been affected by polio and cannot walk participating in a sport like a powerlifting at an international platform that requires extreme power and physical strength? Mr. Rajinder Singh Rahelu is the answer to this question.

Mr. Rahelu is an Indian Paralymic Powerlifter suffering from "Infantile Paralysis". Since his infancy he has not been able to walk. But he did not let his disability come in between him and his dreams. He continued to practice and today, he has created a history of his own by winning a silver medal in powerlifting at the Common Wealth Games 2014. He initially started by lifting a weight of 75kgs but his rigorous training and motivation made him enough to actually lift a weight of 115kgs in a period of 6 months. After grabbing his 1st medal in the field of powerlifting in 1997 at Punjab Open Meet, he never looked back. In the next consecutive year, he won National Powerlifting Championship which gave a great push to his career and life and his achievements have never stopped after that.

He never let his disability stop him, he kept on overcoming the life challenges with his immense dedication and devotion. Today he is a successful coach at Government of Punjab's Sports Department. He is also training the specially-abled powerlifters.

It is the disability heroes like Rahelu that keep us inspired during our lowest days in life. On this Disability Day, we can see him as an inspiration to the 180 million specially-abled Indians to overcome the impact of their disability on their lives!!!

Effectiveness of Transpact’s Vestibulator - An interview with Dr Maya Nanavati

This is a short interview with Dr Maya Nanavati (Occupational Physiotherapist) and her views about Transpact Vestibulator.

What is Transpact’s Vestibulator?

Vestibulator is a compact, fully automated medical device which is ergonomically designed to provide stimulation for vestibular, neurodevelopmental and sensory integration therapy.

These automated and precisely measured stimulations are time saving and more effective compared to manual vestibular stimulations.

Who is Dr Maya Nanavati?

Dr Maya Nanavati is an Occupational Therapist with more than 40 years of experience in Neurology and Paediatric Rehabilitation. She is one of the founders of POSAT foundation (hyperlink to http://www.posatfoundation.in/), a charitable organization which provides rehabilitation and education to physically and mentally challenged children and adults. We are honoured to have her as a Clinical Advisor for Transpact Enterprises.

The Interview:

Hello Dr Nanavati, please tell us more about POSAT-

Posat foundation is a charitable organisation working for the upliftment of physically and mentally challenged children and adults. The trust runs a rehab. centre in Borivali West and special classes for challenged children in Rustomjee International School in Dahisar west and Balbharti School Kandivali West. The Rehab. Centre caters the therapeutic management to the children suffering from cerebral palsy, mental retardation due to any cause including genetic condition like Down syndrome, Autism Spectrum Disorder, ADHD and Learning Disability. 

What do you feel about Transpact Enterprises and the Vestibulator?

Transpact had installed the vestibulator at the centre in December 2017 to check its efficacy in the therapeutic management of children affected with different neurological dysfunction. Later on the equipment may be modified for adults needing the management.

The first pilot study was designed to find out the influence of therapy on vestibulator on reflex responses of children suffering from cerebral palsy. The outcome of the pilot study gave positive results. (Reference - Link http://transpact.in/clinical-study-reports/)

Luckily, by the grace of God, we could purchase a modified version of vestibulator from a donation under CSR scheme of a company named Play games 24x7 on 29th July 2018.

How do you use Transpact’s Vestibulator?

The vestibulator is continuously used for most of the children treated at the centre excluding children suffering from epilepsy. The therapists and the parents of ADHD children and Autistic children have observed a remarkable positive change in their children. The symptoms of hyperactivity and poor attention span reduce drastically with treating the child on vestibulator for 10 minutes during the regular sensory integration therapy session. About 80 children attending the centre are treated on vestibulator in last ten months. 

Will you continue the use of Transpact’s Vestibulator in future?

Yes, We are awaiting further modified equipment within a month or so which will enable us to carry out scientific studies on the influence of Vestibulator on children with Autism, ADHD and Learning Disability. 

We indeed congratulate Transpact and wish the company all the best for the success in launching Vestibulator in open market.

Further reading - http://transpact.in/research-papers-on-the-product-technology/

Transpact Enterprises at Global BioIndia 2019 represents SINE IIT Bombay alongwith other six startups

With an aim to showcase what India can offer to the Global Biotech Sector, Department of Biotechnology (DBT), Biotechnology Industry Research Assistance Council (BIRAC), Government of India have organized Global Bio-India 2019 at New Delhi. This 3-day mega international congregation of biotechnology stakeholders includes representation from national & international bodies, regulatory agencies, Central & State Ministries, SMEs, Large industries, Bio-clusters, Research institutes, Investors, Startups, NGOs, Philanthropic organizations and others. Transpact Enterprises Limited is one of the seven start-ups, Society of Innovation & Entrepreneurship (SINE), IIT Bombay one of the renowned Business Incubators in the country chose for its representation at Global Bio-India 2019. Transpact Enterprises exhibited its fore-runner Product- “The Vestibulator” designed for the treatment Cerebral Palsy, Autism, Attention Deficit Hyperactivity Disorder, Learning Disabilities and Vertigo

Vestibulator is Transpact’s’ flagship & award-winning (Amongst the top 100 upcoming technologies in India) product designed in joint research with The Industrial Research and Consultancy Centre, IIT Bombay to stimulate the human vestibular system. Vestibulator is an innovative therapeutic health care device for vestibular, neuro-developmental and sensory integration therapy. It is the only dosimetric , ergonomically designed, automated therapeutic device Co-patented by Indian Institute of Technology & Transpact Enterprises which performs the complete vestibular Stimulation required for Vestibular habituation/habilitation & rehabilitation.

It is a Comprehensive device which provides stimulations to the vestibular system against gravity in the following motions & postures:

Postures

1. Prone

2. Supine

3. Sitting

4. Quadruped

5. Kneeling

6. Standing

Motions

1.  Spinning

2.  Tilting (30, 60 and 90 degrees)

a.  Forward-backwards tilting

b.  Sideways tilting

3.  Gravitational ascending Descending

4.  Linear motion- forward-backwards

Vestibulator is designed in a way that all the motions in all positions can be imparted with smooth increase in rate, velocity and angle. Also, it provides a safe position for the child in each stage of motor development from lying position to standing position. As single unit to give all stimulation motions for all postures at variable speed, frequency & time duration with predetermined maximum & minimum attributes to all motions, the Vestibulator not only increases the efficacy of the therapy & modernises it but also makes it measurable and recordable.

It is designed to manage accurately the number of cycles, amplitude as prescribed by the therapist. The integrated software enhances disease monitoring. The cloud-based data storage of personalized records will make it easy to access & monitor the treatment records across distances. It saves upon the Cost of treatment, out-of-Pocket Expenditures and time. It will also make Physiotherapeutic healthcare delivery fairer by lowering the cost and increasing access also making therapeutic treatment available and affordable to rural parts of our country. It shall bridge the existing gap between the number of therapists & affected population in our country by enabling the therapist to serve a greater number of patients. Generation of physiotherapeutic E-data will be a milestone to future research.

About Transpact Enterprises:

Transpact Enterprises Private Limited was conceived as a social enterprise by a group of technocrats & academicians in the year 2013 at SINE, Society for Innovation and Entrepreneurship, Indian Institute of Technology Bombay- IIT Bombay with a vision to impact lives of people through continuous technological interventions and innovations. We specialize in design, development, manufacturing, and distribution of therapeutic devices and rehabilitations services with analytics and management software system.

The Skoch Order- of- Merit (2019) recognizes Transpact as one of the top 200 MSME’s in the Country. Its Uniqueness was acknowledged by Bombay Management Association in 2017 and the company was bestowed upon the “Emerging Start-up “Award. Transpact was honored with the Zee 24 Taas, Young Innovator Award in the august presence of Hon. Governor of the State Shri Vidyasagar Rao, Chief Minister of the State, Shri Devendra Fadnavis along with other Ministers under the medical-pharmacy category in the year 2017.

DIWALI WITH OUR SPECIAL CHILDREN WITH EXTRAORDINARY SKILLS!

Transpact is associated with POSAT for three years now. Located amidst the western suburbs of Mumbai, POSAT (Physio Occupational Speech Academy of Therapist) is the brainchild of Dr Chhabria. He always wished to keep POSAT’s rehabilitation professionals at par with their western counterparts and that too in an era where internet and google were unheard of. With this vision, POSAT was founded in 1978 to offer a common platform for rehabilitation professionals to share their knowledge and complement each other in the treatment of the patients.

POSAT runs educational classes for special children at Rustomjee International School, Dahisar(west ) and S.V.P. School in Kandivali(west).At present 120 children are enrolled in these special classes receiving all the facilities that a normal school would provide. The children studying in POSAT suffer various disabilities and dysfunctions namely Autism, Cerebral Palsy, Hearing Impairment, Learning Problems, Hyperactivity and so on.

Diwali is one of the main festivals in our country, India. Every nook and corner of the houses, shops and offices are decorated with lamps, flowers and other ornamental items. When we talk about these decorative Diwali items, our little POSATIAN munchkins weren’t far to make our Diwali shine. These children hold exceptional skills in making different and colourful Torans (Hangings for walls), beautiful Floating Candles , Acrylic Rangolis, Envelopes with unique design work, Malas for pictures or posters and Diya’s. These ornamental articles are a beautiful manifestation of their hard work and effort to transcend the impact of disability on their lives.

Here are some pictures from their collection of decorative items.

Vestibulator: A new generation , programmable and digital therapeutic device designed for the treatment of Cerebral Palsy , Autism , ADHD , Learning Disabilities and more .

“I never dreamt of walking with my Son, neither has he thought of living a day without me” a mother of a 22-year-old son, Mrs Gracy Jerald said about her son who is suffering from Cerebral Palsy. Such is the grief of many more mothers across the world who suffer a complex of emotions such as sadness, denial, blame, fear and confusion on having a child with a special need. It is often said, “No language can express the power, beauty & heroism of a mother’s love (E. Chapin)”. Being a mother is a difficult journey and parenting is its major focus. Having a Child with Special Needs makes this journey more difficult & challenging. Being a special need parent requires a bit more of everything i.e patience, love, empathy, compassion, resourcefulness, finances and energy. Above all the special need moms are true warriors, they fight all the odds & situations life puts in front of them and they never give up. The tiniest development in the child’s medical condition or even half-spoken words of the child or just a hug from the child feels like a gift to her. All she wishes to see and hopes that her child becomes a successful adult in his/her life and can take care of themselves.

According to the World report on disability, 2011 One billion people or 15% of the world’s population, experience some form of disability. One-fifth of the estimated global total of between 110 million and 190 million people experience significant disabilities. In India, the population with disabilities is around 26.8 million, constituting 2.21% of India’s total population if one goes by the 2011 population census data. 

Despite constituting such a significant proportion of the total population, people with disabilities live a very challenging life. Their ‘disability’ is often seen as their ‘inability’ by many and people, in general, have preconceived notions about their capabilities. Barriers to full social and economic inclusion of persons with disabilities include inaccessible physical environments and transportation, the unavailability of assistive devices and technologies, non-adapted means of communication, gaps in service delivery, and discriminatory prejudice and stigma in society (worldbank.org). However, it's the more difficult scenario for those who are physically or mentally disabled and burdened with poverty and excluded from mainstream society. It results in a huge impact on the global economy and a higher risk of increase of poverty, unemployment and less education.

“Special is the word they use when they talk about me
They assume that my diagnosis fully defines me
Sometimes I wish I could only be heard and not seen
That’s what I often think about when I daydream”

D.T. Brunner.

The Pain:

Vestibular dysfunction is associated with the largest spectrum of the human population. According to CDC report 2011, approximately 170 million children live with developmental disabilities related to Vestibular dysfunction. Developmental disabilities are a group of conditions resulting from impairments that affect a child's physical, learning, or behavioural functioning. Affected children typically have sensory impairments (hearing and vision loss), epilepsy or seizures, cerebral palsy, attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), intellectual disability, or other learning disorders.

Children with developmental delays and disabilities are at greater risk of suboptimal health, educational attainment, and wellbeing than are children without such disabilities. CDC estimates an increase in the prevalence of Autism by 15% to 1 in 59 children and 4 in 1000 live births suffer Cerebral Palsy. Also, cases with ADHD and learning disabilities are also increasing alarmingly. Nearly 9.4% of children 2-17 years of age (6.1 million) have been diagnosed with ADHD, according to parent report in 2016. In addition to this 40% of adults above 40 years of age have some sort Vestibular dysfunction issue due to ageing leading to dizziness & balance issues, National Health and Nutrition Examination Survey (NHANES), USA 2004.

Current Treatment Methods & its Lacuna:

Vestibular stimulation/ therapy is an integral part of the treatment for the Cerebral Palsy, Autism, ADHD, learning disabilities, other neuro-developmental & balancing disorders. Treatment methods used for vestibular rehabilitation globally along with Medical Management are Acupuncture, Aquatic physical therapy, hippotherapy and conventional Physio & occupational therapy. Assistive tools used for exercises are physioball, balance board, scooter, swings etc. These assistive tools and devices have a great limitation of space, speed and frequency of stimulation; they do not even provide all the positions and postures required for complete stimulation. There is no device to record the line of treatment. The treatment plan depends upon the qualitative judgment of the therapist.

The Solution:

A new generation, programmable and digital therapeutic device– Vestibulator: An innovation evolved from IIT-Bombay suiting the guidelines of “Make in India” Initiative.

Vestibulator is an automated, dosimetric and ergonomically designed device which is useful for vestibular, neurodevelopmental and sensory integration therapy required for treatment of Cerebral Palsy, Autism Spectrum Disorder, learning disabilities, ADHD, and various Vestibular dysfunctions.

It is a comprehensive device which provides stimulations to the vestibular system against gravity in all the three planes of motions viz vertical, sliding, tilts- lateral, antero-lateral and linear and rotatory motion as well. Vestibular stimulations can be given in all matrices of motions & postures at variable speed, frequency, angle & time duration with predetermined maximum & minimum attributes to all motions.

Recording, Communication and Storage of data and are very essential features of the cloud-based -Vestibulator. Therapy Management, Pathology Grading along with safety and accuracy are the other features integrated with this device. 

It enhances recovery, saves time, space and cost of the treatment. Improvement in balance & postural controls, concentration and independence in activities of daily living and increased interactive behaviour are proven results of the clinical study with Cerebral Palsy Children using Vestibulator. 

This CE-certified device is co-patented by Transpact Enterprises and IIT Bombay and has received clearance from CDSCO, India. 

The other upcoming rehabilitation healthcare products of the company in the developmental stages namely -Balance-o-meter and Mechanomyography device shall benefit healthcare professionals in clinical decision-making and real-time accurate record-keeping.

About the Company:

Transpact Enterprises Ltd, a SINE-IIT Bombay Incubated Med-Tech startup. It was conceived by a group of a technocrat, an artist and an academician, as a social enterprise in the year 2013 with a vision to impact the lives of people through continuous technological interventions and innovations. The company specializes in design, development, manufacturing, and distribution of therapeutic devices and rehabilitations services with analytics and management software system. 

The Skoch Order- of- Merit (2019) recognizes Transpact as one of the top 200 MSME’s in the Country. Its Uniqueness was acknowledged by Bombay Management Association in 2017 and the company was bestowed upon the “Emerging Start-up “Award. Transpact was honoured with the “Zee 24 Taas, Young Innovator Award” in the august presence of Hon. Governor and Chief Minister of the State of Maharashtra in the medical-pharmacy category in the year 2017.