Lack of muscular dystrophy awareness a major concern

Vijayawada: Due to the desperation of finding a cure, family members of children who are suffering from Muscular Dystrophy explain that they have no other choice, but to look for new treatment options which would prolong their kids' lives.

This desperation often results in parents approaching quacks like Bhoomeshwer Rao whose treatment resulted in the death of a 12-year-old boy in Vijayawada on Tuesday.

Members of the Amaravati Muscular Dystrophy Association ( AMDA ) asserted that there are more than 300 members from across Andhra Pradesh in their association who are seeking a cure and welfare measures to survive.

Speaking to TOI, Pawan Kumar, a member of AMDA explained that the number of muscular dystrophy patients in the state would be more as they are yet to identify the victims in Srikakulam, Prakasam and Vizianagaram.

Muscular dystrophy patients suffer more due to the lack of registry and clinical research which causes a delay in curing the genetic disorder. “There are ways to slow down the progression of muscle degeneration. But the lack of awareness and guidance to seek appropriate treatment has resulted in many children and youngsters losing life within just five to six years after being diagnosed,” Pawan Kumar said.

Gitika Khanna, another member and a victim of muscular dystrophy said that the research in finding a cure for the disorder has been hopeful. However, the cost of availing Gene therapy - a treatment for muscular dystrophy is 70 times costlier abroad than what an average muscular dystrophy patient spends in India.

“The most common form of the disorder that affects children in Andhra is Duchenne Muscular Dystrophy (DMD) which is more serious compared to other forms. However, a majority of patients (including adults) are diagnosed with Limb-girdle muscular dystrophies which has seven other sub-categories within them,” Pawan Kumar said.

“Apart from the treatment, there are ways to slow down the symptoms. There was a case when doctors deemed a class 10 student in Vijayawada of surviving a maximum for two months. But, through means of proper excise and diet, he did manage to slow down the symptoms,” Dr K Rama Chandra Rao, a city-based physiotherapist and a neurologist said.

There are also a significant number of patients with Spinal Muscular Atrophy (SMA) in the AP which is considered as the most severe form of muscular dystrophy where the patients survive for a maximum of three to four years post detection.

AMDA members also explained that few treatments have been quite helpful like myopathy exercise which is being done in Tamil Nadu, however, to avail such a course which lasts about 40 days, patients have to shell out Rs 1.4 lakh as the cost of procuring the machinery stands high.