Creating awareness for Fragile X

 

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Approximately 1 in 3,600 to 4000 among males and 1 in 4000 to 6000 among 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 pediatricians and gynecologists’ 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).

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 the occasion, Dr. Randi Hagerman,MD, Medical Director, UC Davis MIND Institute ,USA said, “Its 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 Neuro developmental Disorders (ITPND).”

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 lack of awareness which does not allow early intervention in terms of appropriate diagnosis and treatment to take place in such cases.

 Extending his support to the cause Dr. Anupam Sachdeva, MD, Director Institute of Child Health, SGRH, President, Indian Academy of Pediatrics (IAP) said, “We have taken this step to come forward and support The Fragile X Society, India, as we feel that awareness needs to be increased in India as far as Fragile X Syndrome and its associated disorders are concerned.  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 utilize 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. ”

Ms. Shalini Kedia, Founder Member and Chairperson, The Fragile X Society, India said, “The awareness levels in India with respect to other countries are considerably low. In the past, for instance in 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 world wide statistics, we can easily say that India has over 4, 00,000 affected individuals. There are organizations 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.

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