Bhubaneswar: In a first, the Odisha Duchenne Muscular Dystrophy Association (ODMDA) launched a campaign in more than a dozen districts of the state to sensitise people about Duchenne Muscular Dystrophy (DMD), a rare genetic disorder affecting children, to mark the World Duchenne Awareness Day, (September 7) Thursday.
ODMDA is an association of parents of children affected by DMD. Members of the association, led by its president Bishnu Charan Panigrahi, affixed posters and banners at district headquarter hospitals and other major healthcare facilities, including the All India Institute of Medical Sciences (AIIMS) and Capital Hospital here.
Several members of the association in districts like Khurda, Cuttack, Kendrapara, Jajpur, Bhadrak, Keonjhar, Balasore, Angul, Sambalpur, Bolangir, Bargarh and Subarnapur marched various healthcare facilities and hung banners and posters depicting the symptoms of the genetic disorder.
World Duchenne Awareness Day is an initiative by World Duchenne Organization. The Day aims to raise awareness about Duchenne and Becker Muscular Dystrophy, caused by mutations in the dystrophin genes. These are devastating genetic conditions that produce symptoms such as learning disabilities, frequent falls, waddling gait, and many more. It significantly impairs one’s ability to function normally in their daily life.
Children born with DMD start showing symptoms at an early age of 5-6 years and become wheelchair-bound by 12-13 years of age.
This day shines a light on what it is, how it affects lives of people having DMD in kids, and what could be done about it. It also equips people with the right knowledge needed to care for someone suffering from this condition.
Earlier this year, the state government, following judicial intervention, had announced a one-time assistance of Rs 10 lakh to meet requirements like electric wheelchair, appropriate physiotherapy, genetic tests and treatment at super specialty institutions, among others. Many of the parents/patients have received the amount.
However, there is no proper treatment available in India so far. Parents and caregivers are having a harrowing time in taking care of their children while there is no hope for medicines in India. Although gene therapy has got FDA approval in the United States, it costs around Rs 26 crore and is age-specific.
Meanwhile, some children have received Exon-skipping injections in New Delhi but the impact is yet to be known.
Speaking to OrissaPOST, ODMDA president said, “We have been running from pillar to post for proper treatment of our children but to no avail. Today, we have launched a campaign in Odisha to raise awareness among the people about the dreaded disease as most of the people in our state are unaware of the genetic disorder. We request the State and the Union governments to formulate a policy to prevent birth of DMD children through proper tests. We also pray for treatment of our children at the earliest.”
PNN
