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Written By: Editorial Team | Updated : February 28, 2017 2:27 PM IST
The Fragile X Society, India in association with UC DAVIS MIND Institute, USA; Genetic Section, Dept. of Pediatrics, WHO Collaborating Center for Genetics, AIIMS, New Delhi; Institute of Genetics and Genomics, Sir Ganga Ram Hospital, New Delhi; and Delhi Chapter, Indian Academy of Pediatrics held the joint Indo-USA medical symposium at the All India Institute of Medical Sciences(AIIMS)in New Delhi today. Starting with Delhi, The Fragile X Society, India is holding a four city medical symposium in Mumbai, Kolkata and Bangalore.
The Fragile X Syndrome is a rare condition, which is caused by a change in a gene that is inherited at the time of conception. When the gene called the FMR1, found in the X chromosome undergoes a change and does not function properly, it affects brain functions. It then causes a wide range of cognitive impairment, from mild learning disabilities to severe intellectual disabilities (ID) that can impact individuals and families in various ways. Fragile X Syndrome is the most common known cause of autism or "autistic-like" behaviours.
The symposium was attended by eminent doctors and healthcare experts like Dr Anupam Sachdeva, MD, Director Institute of Child Health, SGRH, President, Indian Academy of Pediatrics (IAP); Dr Randi Hagerman, MD, Medical Director, UC Davis MIND Institute, USA; Mr Robert Miller, International Patient Advocacy Organisational Consultant, Dr Ishwar Verma, FRCP, Director, Institute of Genetics and Genomics, Sir Ganga Ram Hospital, New Delhi and Ms Shalini Kedia, Founder Member and Chairperson, The Fragile X Society, India. (Read: Are you suffering from the X syndrome?)
Speaking at the occasion, Ms Shalini Kedia,Founder Member and Chairperson, The Fragile X Society, India said, The awareness levels in India on other countries are considerably low. In the past, for instance in the USA, toddlers at the age of 36-42 months were detected with FXS, whereas children in India were diagnosed at ages of 10yrs, 12yrs, 16yrs or even 40yrs.This led to a huge gap in their treatment cycle. With The Fragile X Society, India s initiative of dispelling ignorance amongst the large population of India has bore fruit.The youngest Fragile X affected child we have seen was just one year old. This has happened only because of awareness amongst professionals.
As per the worldwide statistics, we can easily say that India has over 4, 00,000 affected individuals. There are organisations all over the world focused on creating awareness for Fragile X. Nearly every state in the US has a Fragile X Society working towards this goal. - Ms Kedia added. Having a child with special needs is challenging in itself and dealing with the social stigma, and ignorance surrounding it makes it even more difficult. Such is the case of Fragile X Syndrome and its associated disorders.It is also disheartening to note that the patients and their guardians face social exclusion. The root of stigma lies in the differences in perception leading to a lack of awareness which does not allow early intervention regarding appropriate diagnosis and treatment to take place in such cases.
The Fragile X Society, India promotes public and professional awareness among the parents and eminent doctors all over India. It extends help to families with affected children regarding literature, guidance and a deep understanding of how Fragile X can impact families. It holds seminars, workshops and conferences in Mumbai and various parts of the country. Approximately 1 in 3,600 to 4000among males and 1 in 4000 to 6000among females are affected by FXS. Usually, males are more severely affected by this disorder than females. Therefore it is vital to spread awareness among the medical fraternity especially paediatricians and gynaecologists as well as parents and the couples planning to have a child so that children with Fragile X Syndrome are detected early in life. Due to advancement in medical sciences, there are many treatments like medication and therapies available at different centres, which significantly improve the quality of life of a child or an individual affected with Fragile X Syndrome (FXS). Here are 8 things you can blame on your genes!
The Indian Academy of Pediatrics (IAP), the apex association of paediatric discipline has come forward to support The Fragile X Society, India to take forward the motto of a better Fragile X Syndrome care among the affected individuals in every nook and corner of India. Speaking at the occasion, Dr Anupam Sachdeva, MD, Director Institute of Child Health, SGRH, President, Indian Academy of Pediatrics (IAP) says, Cases of Fragile X Syndrome and its associated disorders are mostly not reported in India. Therefore, we at IAP, are preparing guidelines for management of the syndrome, as it is necessary to create awareness among the doctors who will manage the children or individuals affected with FXS and its associated disorders. It is, therefore, vital to utilise the knowledge gathered from the guidelines so that it can be used for early and better diagnosis of the syndrome and plan its treatment accordingly.
The Fragile X Society, India has also partnered with UC DAVIS MIND Institute, USA through which the internationally acclaimed researchers and healthcare experts would create awareness and talk about the advances in diagnosis, management and therapy of Fragile X Syndrome and its associated disorders. Speaking on occasion, Dr Randi Hagerman, MD, Medical Director, UC Davis MIND Institute, USA said, It has been our constant endeavour to create a better life for individuals affected with Fragile X Syndrome and its associated disorders.We are happy to be associated with The Fragile X Society, India for spreading awareness about Fragile X Syndrome and its associated disorders in India. We have been training doctors, psychologists in fragile X, autism and other neuro-developmental disorders through our International Training Program in Neurodevelopmental Disorders (ITPND). Here's everything you need to know about autism.
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