Ignorance Hounds Muscular Dystrophy
It was formally recognised as a disability in India only 7 years ago
Despite advancements in medical science, certain ailments still remain incurable. One can imagine the plight of those who suffer from such diseases and live a life of struggle.
One such group of people are those born with Muscular Dystrophy (MD), that is said to be incurable so far. Muscular Dystrophy is a progressive neuromuscular genetic disorder where the muscles gradually lose their strength. Eventually, those afflicted are rendered immobile and become dependent on others to go through basic daily activities.
Muscular Dystrophy is genetic, and at times can affect more than one sibling within a family. The disease itself has several variants, and can strike at any age.
One can imagine the long struggle of those who suffer from it, by the fact that it was only around seven years ago that the condition was formally recognised as a disability in India. And that too when the person campaigning for the cause managed to make a bureaucrat understand how difficult it is for those with MD to even pick a cup of tea themselves.
However, the ailment still does not figure on the agenda as there are many other diseases affecting a far larger number of people. “There is a need to segregate the disability segment in the next census to address the concerns.
“The problem gets complicated on account of very little awareness and misconceptions, although this ailment is easily diagnosed through a creatine phosphokinase (CSK) test. The disease progresses with shrinking of muscles, setting in of deterioration leading to eventual deforming of limbs,” Vipul Goyal who is the general secretary of Indian Association of Muscular Dystrophy (IAMD), explained.
Goyal and two out of his five siblings were hit by the disease in the prime of their youth. “Things hit me in the face when I was thrown out of the group selected for the Republic Day parade as my walk was not normal. I spent the next 11 years of my life in depression feeling that everything was lost.
“Imagine what my parents must have felt, as besides me, two other siblings were also to be later detected with the same problem. Luckily my parents had a very positive attitude towards life but the same does not hold true for everyone.
“Imagine the mental state of parents and the patients themselves when they get to know what they have been struck with. The patient loses the will to live. He or she needs immense motivation to face the challenges that come in the way as even a small thing like brushing teeth becomes a daunting task,” Goyal explained.
The three siblings affected by the ailment went on to be successful business persons in Solan in Himachal Pradesh. Goyal’s sister Sanjana who ran a boutique for close to three decades before dedicating all her time for running an Integrated Muscular Dystrophy Rehabilitation Centre (IMDRC) outside the town said, “India has more than 45 lakh patients dealing with this ailment. The initial symptoms range from a person resorting to toe walking, needing a railing support to walk or being unable to squat.
“It is an ailment that is spread all over the country and is recognised as a rare disorder. More cases are reported from Maharashtra, Gujarat, Rajasthan and Himachal Pradesh where awareness levels are comparatively higher.”
The centre holds regular camps for patients and attendants focusing on physiotherapy and hydrotherapy along with psychological counselling. “The two therapies can prolong progression and lead to a sort of status quo for the patients. We also make them play Boccia, the only physical game that people with Muscular Dystrophy can play. We have had patients ranging from eight years to 64 years of age attending the camps.
“They come from all over the country and we have had sufferers even from Saudi Arabia, Hong Kong, Pakistan, Nepal and Bangladesh,” Vipul Goyal said.
He explained that a large number of people suffering from the disease have done exceptionally well in life. The patients that have visited the IMDRC include former army men, police personnel and those from other walks of life.
This reporter met Shailesh Kumar, a scientist with Defence Research and Development Organization (DRDO), who has bravely fought the challenges posed by this ailment. “I was heartbroken when at the age of 11 years, I was detected with this ailment. My father who is a farmer in a village near Chhapra in Bihar was told by the doctor that I would not survive long.
“The problem was diagnosed as I used to fall down very frequently while walking. The family was not interested in enrolling me for higher studies after doing matriculation from a school in the village. But I stood my ground, and initially taught at a coaching academy to fund my education.
“Later, I enrolled in an engineering college and afterwards in Indian Institute of Technology (IIT) Delhi on scholarships. I have been working in the DRDO for almost two decades now. Positive outlook plays a big role in tackling such situations as those posed by this disease,” Shailesh explained.
His ailment progressed and so did his determination to overcome the challenges. Today he needs help to stand up but can walk with the support of a stick. He is married and the couple has two children.
More needs to be done at the level of the government. “There is a need for setting up a model in every state wherein technical training and therapies can be given at subsidised rates. Priority needs to be given to Muscular Dystrophy under an official agenda.
“There is a need to promote research by pumping in resources so that a medicine can be developed to treat the problem. This medicine needs to be provided free or at subsidised rates for the patients in the developing world. The medicines currently being offered in the West cost Rs 18 crore and above,” Vipul said.
“Our scientists are capable of developing the medicine and are working towards it. There have been positive results from the trials conducted on mice but still a lot needs to be done,” Sanjana added.