BHUBANESWAR: The Odisha Duchenne Muscular Dystrophy Association (ODMDA) has urged the Centre and the state government to formulate a policy to prevent the birth of children with critical health conditions through proper tests.ODMDA is an association of parents of children affected by DMD. The body has launched a state-wide campaign to sensitise people about DMD, a rare genetic disorder affecting children.
Members of the association led by its president Bishnu Charan Panigrahy visited various healthcare facilities in over a dozen districts and affixed posters and banners at district headquarters hospitals and major healthcare facilities, including AIIMS and Capital Hospital here.
There are more than 30 types of muscular dystrophies with DMD accounting for about half of all muscular dystrophy cases. It is a devastating genetic condition that leads to learning disabilities, frequent falls, waddling gait, and many more.
“The disease significantly impairs one’s ability to function normally in their daily life. Children born with DMD start showing symptoms at an early age of five to six years and become wheelchair-bound by the time they attain 12-13 years of age. Since there is no definite treatment, steps must be taken to prevent the birth of DMD children,” said Panigrahy.
Earlier this year, the state government, following the judicial intervention, had announced a one-time assistance of Rs 10 lakh to meet requirements like electric wheelchairs, appropriate physiotherapy, genetic tests and treatment at super speciality institutions, among others.