New Delhi: Over 500 parents of children affected by rare genetic disorder Duchenne Muscular Dystrophy (DMD) from 21 states, including Odisha, took out a rally at Jantar Mantar here Friday to press for immediate treatment and assistance.
Odisha DMD Association (ODMDA) president Bishnu Charan Panigrahi, who led the delegation of at least 16 parents from the state, said research should be carried out for its medicine in the country.
“As long as the medicine is not available, the government should provide assistance to the parents of DMD-affected children. Despite challenges posed by the disease, the children are studying hard to become financially independent. However, they are not receiving any support from the government,” Panigrahi, who hails from Odisha’s Jajpur, said.
About DMD, Ratan Kumar Pradhan, a resident of Odisha’s Keonjhar and father of Arpita, 14, diagnosed with the disease, said it is a rare genetic disorder that causes progressive muscle loss in children.
“The child starts showing symptoms at the age of 6-7 years when it walks on the toes. The disease, in the form of a defective dystrophin gene, which hinders the production of very vital dystrophin protein, has been present since birth. Growing rapidly, soon it engulfs every muscle of the body including the heart and lungs. Subsequently, the child becomes wheelchair-bound. Most of them don’t live beyond their 20s, which is of serious concern. We are seeing our children dying every day,” Pradhan pointed out.
He demanded that the government should focus on creating awareness about the disease by introducing lessons in the school curriculum.
“A subject on various types of muscular dystrophy should also be introduced in the curriculum. When my daughter was diagnosed with it, I was totally in the dark. I didn’t know about the disease. Massive awareness needs to be created on this. The cost of physiotherapy for children is over Rs 1 lakh annually, while the cost of treatment is over Rs 15 crore which is available abroad. I urge Prime Minister Narendra Modi and Health Minister Mansukh Mandaviya to initiate research on the disease. The government should constitute expert committees,” Pradhan suggested.
Sangramjit Dash, a resident of Odisha’s Cuttack whose son Satamanyu is diagnosed with the disease, said there is no treatment for DMD in the country.
“While companies like Pfizer and Sarepta have been at an advanced stage of their research. It is yet to take place in India. I have travelled all over the country but couldn’t find a cure. The government needs to do research and development on the disease. The children as well as parents face a lot of problems. The children need round-the-clock assistance from parents. This has been spreading fast in India also and research is needed to find out its causes,” Dash said.
The parents have also submitted a memorandum to the Union Health Ministry on the disease.