By: Dr Satyam S. Bhodaji
Downs syndrome were the extra genetic material from chromosome 21 is transformed to a newly formed embryo by their parents is were all the problem is created. These extra genetic material makes the normal number of chromosome from (46 +2) to (47 + 2) and is responsible for the developmental abnormality that occurs in the newborn baby. All above the head.... What do u really mean by Down syndrome and why is it important to know?
In simple terms it is a genetic disorder for which a specific cause has not been found, but most commonly said to be late pregnancy after 35 years and family history. The world prevalence is between 1 in 1,000 live births worldwide were a study done in march 2017 in India says 1.2/1000 live births per year. There are many misconceptions on this saying that children with downs syndrome cannot live a normal healthy life or they do-not have a good life span. In some villages still they are taken to be a curse of God and are neglected or kept apart from the normal community when they have not done any mistake. Then why should they suffer the mistake and negligence of others? It is we who should know about them to bring these angels in our community and make use of their unique abilities. Yes unique abilities! Every person on this earth has unique ability that we should understand and bring it into public. Help them, so they can shine with their abilities.
Every baby is unique in its physical and functional capabilities with the slight difference in hallmark appearance like there is small head and short neck, upward slanting eyes and flat face, tongue protruded, joint hyper-flexible and muscle may lack tone etc. There may be growth retardation, with IQ ranging from 50 to 70 and obesity may occur with aging. The extra genetic material also affects all the organs and systems in the body and complications may either rise at birth or later in life e.g most commonly seen in 50% of the cases is heart disease which require evaluation, proper care and related treatment. Even though not diagnosed with particular condition they still need special care and support depending upon their intellectual abilities and physical function and if all theses factors are taken care then the child can achieve its maximum life span that’s till 60 yrs. (approx.) according to many recent studies. So, then the question arrives that till what extent we can push them??? and the answer lies in these two beautiful examples of our own nation i.e. puttur Suresh Nayak (40 yr.) who holds many records in various intellectual skills including the youngest magician to perform most magic shows for a noble cause and for his special phone memory and Aditi vermas journey who runs a restaurant in Mumbai. Their stories and of many more, feel free to “GOOGLE” which will definitely inspire you!!
Today on the world downs syndrome day i would like to stress on their self-advocacy and independent living. We should be aware of all the rights that are reserved by Indian government for them. In short note Rehabilitation council of India has set up different state and local bodies in collaboration with NGOs to regulate responsibility for standardize training of their personnel and professional life by providing proper Rehabilitation and Special Education. Office of the Chief Commissioner for Persons with Disabilities has authorized on his/her own motion or on application to look into complaints relating to deprivation of rights of persons with disabilities; and non-implementation of laws, rules, bye-laws, instructions issued by appropriate authorities for the welfare and protection of rights of the disabled. NHFDC provides information on loans availability. Ministry of social justice and empowerment looks after the affairs related to the welfare and education of person with any disabilities.
YES! Physical functioning is the one that can change the life of any children with downs syndrome. Though there are many tests that can detect down syndrome before the baby is born. The whole medical, physiotherapy and paramedical teams like speech-therapist, occupational-therapist psychologist etc has to work along with the child and child’s parents, family and community tackling the most important role in making the child attain his/her maximum intellectual ability and physical functioning to improve their quality of life.
Being physiotherapist, focusing on physical therapies; a physiotherapist will record and treat the infants with developmental delay in gross motor functioning like standing and walking, along with other muscular skeletal and systemic disorders. It has been reported that if treated during infancy, the children with Down syndrome can have increased life expectancy as recognition and treatment of underlying medical conditions may improve by giving physical therapy. Physical therapists will work with the individual, the family, and other health care providers to reduce the effect of these conditions, or even prevent them from developing. There are many recent therapies by effective time management can improve the quality of life and with vocational therapy can assist them to find appropriate profession. A physical therapist can support and guide them with all the needed knowledge and technology.
Good medical care, strong educational environments that include physical therapy from preschool to high school and into adulthood, and also support from families can help adults with DS to live life at their maximum potential. Many adolescents and adults with DS participate in family and community activities and lead happy and productive lives.
"Disability only becomes a tragedy when society fails to provide the things needed to lead one’s daily life” by: Judith Heurmann. At last “Help them, so they can shine with their unique abilities, and if u can’t help them then we are the real disabled.”
Writer: Dr. Satyam S. Bhodaji (PT)
(Asst professor, Royal collage of physiotherapy, Malegaon)
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