Hope for muscular dystrophy patients

Ambika Sharma in Solan

Vipul Goel, 57, recalls those agonizing months when he was hardly 13 years old: he could climb stairs with great difficulty. Walking too gradually became arduous as his calf muscles simply gave in. Somehow he pulled on. He also recalls his first job interview. “I was unable to greet the panel members.” After the interview, he had to exert himself to get up from the chair, forcing interviewers to realize that he was, in fact, suffering from some extreme muscular problem. 

He is today a successful businessman.

Winner of the President APJ Abdul Kalam award in 2004, his sister Sanjana, shows no such signs of the same debilitating disease. She successfully completed her M.Sc in Home Science and today runs a boutique which has helped her become financially independent. The two have muscular dystrophy (MD) -- a debilitating disease without 100% cure. “Accepting the problem by breaking the social taboo and believing that life should not stop is what inspired us to move forward,” says Vipul. 

The two have gone many steps further: they are helping in setting up Manav Mandir, a multi-specialty hospital, at village Kothon, near Solan. The centre is emerging as a hope for hundreds of MD patients. 

An initiative of the Indian Institute of Muscular Dystrophy, the hospital was inaugurated in November 2016. It has found a few liberal donors such as Satluj Vidyut Jal Nigam which has already pooled in Rs 3.55 crore. The centre is spread over 1942.50 sq m (about 2,300 sq yards). The brother-sister duo want it to emerge as the nodal hub for complete care, management, test and diagnosis, rehabilitation, orientation, rejuvenation, research and all therapies for MD. 

“The centre caters to neuro-muscular disorders which appear as symptoms as early as the age of 3 in grave cases and gradually impair the muscles as well as the respiratory system. While forcing the dependency level of a patient, the disease reduces one’s normal body movements.” Since the disease is a challenge for the medical science, the centre provides relief to the patients by offering advanced physiotherapy, hydro-therapy, yoga and meditation services.

It has found social workers who have volunteered not only to create awareness about MD but also trace such patients and encourage them to visit the centre. “Since the disease is perceived as a social taboo, our team’s first job is to try to introduce a sense of confidence and trust among the people,” says Urmil Thakur (66). 

With little credible information about MD, the families usually prefer to keep such patients secluded. “An in-depth counselling is held for such patients and their families. An effort is made to change their mindset by exposing them to the best and worst sides of this disease,” says Thakur. The day for the MD patients begins with yoga, deep breathing and meditation. A trained team of physiotherapists then attends to each patient. 

As many as 40 patients from as far as Ahmedabad and Rajasthan have attended the special week-long physiotherapy camps organised in November last year. Dr Muttu Ganapati, Head of Department, Physiotherapy, says specially designed tables and other equipment are provided to the patients, who range from 5-year-old to those in their 50s.