World Duchenne Awareness Day to be observed on Sept 7

On the eve of observance of the first World Duchenne Awareness Day all over the globe on September 7, Duchenne Parent Organisations will organize activities to raise awareness on this rare disease and build a better future for the patients affected with it.

PTI| Updated: Sep 05, 2014, 21:19 PM IST

Coimbatore: On the eve of observance of the first World Duchenne Awareness Day all over the globe on September 7, Duchenne Parent Organisations will organize activities to raise awareness on this rare disease and build a better future for the patients affected with it.

Duchenne Muscular Dystrophy (DMD) is a devastating, life threatening, genetic neuromuscular disorder which affects approximately 2.5 lakh children around the world, Dr B R Lakshmi of Molecular Diagnostic, Counseling, Care and Research Centre (MDCRC), in Kurinji Hospital told reporters here today.

The vast majority of Duchenne patients are boys and young men who progressively lose their physical functions before they inevitably die of this cruel disease, Lakshmi said.

Lakshmi, chosen as one of the top 15 women in health care sector in India in 2013 and honoured with the prestigious "Yuvashakti Award" for her outstanding achievement in community health, said though the knowledge about good medical care was widely available, the majority of Duchenne boys still do not have access to good care and facilities.

Based on the international guidelines, MDCRC offers a comprehensive multi-disciplinary clinical care programme involving pediatrics, neurology, orthopedics, psychiatry, pulmonology, cardiology and psychosocial management for DMD affected children.

MDCRC is the only centre in India offering multi- disciplinary clinical care to children affected with DMD, since there is currently no cure for DMD, but for the first time ever there are several drugs under development.

In Europe, the first drug already received Conditional Approval, she said.

A survey, first of its kind in the world, in the five western districts of Tamil Nadu for these rare disorders, in which nearly 14 lakh houses were covered between 2011-2013, noticed their prevalence and the Centre identified close to 2,200 children affected with DMD.

The facility holds the largest database for DMD in the country, which helped to identify patients suitable for any treatment when they reach the common man, since treatments for genetic disorders necessitate tailor made cures.