Bengaluru: Ignorance is no bliss, especially for parents having children with genetic problems. It will mean sleepless nights and umpteen rounds to the hospital. It becomes all the more scary when not much is known about the disease.

Fragile X Syndrome is fairly unknown in India and not many doctors have spoken about it, nor has there been much talk about it.

It is a rare condition caused by a change in a gene inherited at the time of conception. It causes a wide range of cognitive impairments, from mild learning disabilities to severe intellectual disabilities that can impact individuals and families in various ways.

The syndrome is the most common known cause for autism or “autistic-like” behaviour. Approximately 1 in 3,600 to 4,000 among males and 1 in 4,000 to 6,000 among females are affected by this, according to studies.

This calls for spreading awareness and pediatricians and gynaecologists should interact with couples planning to have a child, so that children with this syndrome are detected early, according to experts.

“There isn’t much awareness about the syndrome. Medical practitioners should talk to patients about it,” says Dr G. Kumar, paediatrician with Saragur-based VMH in Karnataka.

During the first ever four-city Indo–US endeavour to create awareness about the disorder, doctors exchanged knowledge about the latest evidence-based treatments. It was organised by The Fragile X Society, India, in association with UC DAVIS MIND Institute, US.

Society founder member and chairperson Shalini Kedia said that, as per the world wide statistics, India has over 4 lakh affected people. The society had taken up the herculean task of dispelling ignorance among a large population across the country, she added.

Dr. Anupam Sachdeva, director of the Delhi-based Institute of Child Health, SGRH, said, “Cases of Fragile X Syndrome and its associated disorders are mostly not reported in India. Therefore, IAP is 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.”