New Delhi: “You see other children growing up normally, and your own child needs help to even turn on the bed. It breaks me every day,” rued 40-year-old Rajasthan resident Puja, who goes by only her first name.
A widow, Puja’s only child, six-year-old Prabhas, suffers from Duchenne Muscular Dystrophy (DMD), a hereditary muscle-wasting disease that affects an estimated one of every 3,500 children globally, mostly male, and has no cure.
Fifty-year-old Delhi resident Bal Krishna, whose 15-year-old twin sons are similarly afflicted, added: “Traumatic is a mild word for what we go through. Parents talk about the future of their children as they grow. We can’t even do that.”
Krishna and Puja were among 500 parents from 21 states — including Rajasthan, Karnataka, Punjab and Chhattisgarh — who gathered for the “first-of-its-kind rally in India” at Delhi’s Jantar Mantar Friday, to raise awareness about DMD.
According to government estimates, eight of every 10 children suffering from DMD in India die by the age of 20. In the absence of effective treatment, and medicines and physiotherapy only helping ease symptoms, the trauma that families of DMD patients face on a daily basis is “indescribable”.
While DMD is a congenital disease, symptoms usually start manifesting around the age of four and begins with leg muscle weakness. The disease is a result of a defective dystrophin gene which prevents the production of an important dystrophin protein.
The Indian government has till date not put out any data on the number of children suffering from DMD, claimed the parents at the Jantar Mantar rally.
“The government has no data. Many children across India die of this disease without the government even acknowledging what they were suffering from. The disease mostly goes undetected owing to lack of awareness,” pointed out Bal Krishna.
In the 95th edition of his radio show ‘Mann Ki Baat’ aired in November last year, Prime Minister Narendra Modi had spoken of the need for awareness about DMD and focusing efforts on research and treatment of the disease.
The 2022 film Salaam Venky, starring Kajol, was based on the real-life struggle of 25-year-old muscular dystrophy patient Kolavennu Venkatesh who had in 2004 filed a plea for euthanasia, leading to a nationwide debate around the subject. DMD is one of the most severe and common forms of muscular dystrophy.
ThePrint reached the Health Ministry on email for comment but received no response till the time of publication of this report.
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‘Facilitate research, make drugs cheaper’
As the weather in Delhi remained inclement Friday, children in wheelchairs and parents sporting ‘Save Our Sons’ badges huddled inside a tent at Jantar Mantar.
Among the DMD-afflicted who were gathered there was Tarandeep Kaur, a 28-year-old woman in a wheelchair. “I want to walk on my own feet and see the world,” she told ThePrint, while rolling her chair in the crowd, cheering on others, encouraging them to smile and partake of the refreshments that had been laid out.
An eight-year-old girl fell off her wheelchair, and injured her forehead.
The families at the rally raised two major demands — that the Centre set up an empowered panel, including representatives from the government, medical community and parents of children suffering from DMD, to amend rules so that reimbursement of medical expenses related to the disease is not denied by insurance companies, and secondly, that the government supports and funds indigenous research to develop a treatment protocol for DMD.
“The Centre can at least start a centralised portal (for those suffering from DMD). We want the government to also facilitate research into the disease, which is not currently happening because there is no single-window clearance for drug companies and for the import of drugs for DMD to India. These medicines are super expensive, with costs running into crores. Some indigenous research can help in making the drugs more accessible,” Bal Krishna told ThePrint.
Pooja Handoo remembered a time before DMD restricted her son, Tanav, to the wheelchair.
“My son was so brilliant. He was a yellow-belt holder in taekwondo and a great swimmer too, but in the past two years, I have never seen him do anything by himself… “Other children have time, but my son doesn’t have time to see the world,” she lamented.
Her husband, Amit, added: “We don’t want funds. We only want the government to provide free medicines and physiotherapy to our children.”
Tanav, who was also present at the rally with his parents said, “I want to get medicines because I want to play, I want to run, and I want to be like the others.”
In 2018, Indian Association of Muscular Dystrophy had established the Integrated Muscular Dystrophy Rehabilitation Center in Solan, Himachal Pradesh, for DMD patients to receive comprehensive care and management.
Jagdeesh (who only goes by his first name), 34, who came all the way from Karnataka to join the rally, told ThePrint: “I have travelled repeatedly from Karnataka to the Solan centre for treatment for my son Gagandeep (9 years old) over the past 13 months and have spent Rs 20 lakh in the last two years on this. But doctors say only I have to take care of him.”
He added: “I know my son cannot live, yet I want to save him.”
Another parent who said he had been been visiting Solan for the past six months for DMD treatment is Sanjeev Bansal from Meerut. His 11-year-old son Aarav is afflicted with the disease.
The need for awareness
While the Indian government has identified many rare diseases under the National Policy for Rare Diseases, launched by the health ministry in 2021, the prevalence of DMD in India is not well-documented due to limited research, the parents alleged.
“Clinical trials are underway in many parts of the world to find a cure for this disease. Exon skipping, gene therapy and skin cell therapy are also being used in many places. However, a cure has not yet been found,” Sheffali Gulati, head of Paediatric Neurology at AIIMS Delhi, told ThePrint.
She added: “The government can provide financial support to patients in procuring and importing these newer medications. It can also help in easing the cumbersome process of obtaining the requisite approvals from drug regulatory authorities for the import of these newer drugs.”
Doctors ThePrint spoke to said DMD does not only affect the muscles of a patient, but their entire life and even that of their family. Living with DMD requires strength, resilience, and a supportive community. “We must continue to work towards finding a cure and providing effective treatments to improve the lives of those affected by this devastating condition,” said Akhilesh Yadav, associate director, Orthopaedics & Joint Replacement, Max Super Speciality Hospital, Vaishali.
He added: “Estimates suggest that DMD affects approximately 1 in 5,000 to 6,000 male births globally, which could translate to a significant number of cases in India’s population of over 140 crore. The lack of awareness around DMD is generally attributed to the social stigma around disabilities in our country, but recent times have shown an increase in education and awareness. It is essential for parents to provide early diagnosis, regular medical check-ups, physical therapy, medication, assistive devices, and emotional support to manage the disease.”
(Edited by Nida Fatima Siddiqui)
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