India's 1st centre for kids with neuromuscular diseases aims to offer total support to families
When Arnob Saha's daughter was diagnosed with spinal muscular atrophy (SMA), he was able to get the right kind of medical care.
SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement.
Saha is among the lucky exceptions. Most doctors in India are unaware of this condition and that is harrowing for parents who have children with the disease.
"The first challenge is the right diagnosis. Half the medical fraternity in India is coming to be aware of this condition, so a lot of children in India go undiagnosed. We were lucky to get someone who was familiar with SMA and treats patients with the condition."
It was experiences like these that led Dr Ann Agnes Mathew, a paediatric neurologist and neuromuscular specialist, to start The Muscle and Nerve Clinic , India's first paediatric neuromuscular service in Bengaluru.
The centre is located at the Bangalore Baptist Hospital and has been set up in partnership with the Organization for Rare Diseases, India (ORDI). The ORDI is a patient-centered non-profit organization with a mission to improve the health of patients with rare diseases across India.
The centre has a range of specialists who have come together to provide care and support for patients who suffer from rare diseases that affect the muscle and nerves, leading to weakness, like Duchenne Muscular dystrophy, Spinal Muscular Atrophy, Congenital Myopathies, Congenital Neuropathies, Congenital and Acquired Myasthenias and Limb Girdle Muscular Dystrophy, to name a few.
We live in exciting times, where many of these diseases may very well have a cure one day soon. But until such time, we owe it to our children, who are affected by these conditions, to provide them with a better quality of life, ensuring that they have access to the same standard of care which their western counterparts have, using available resources efficiently and sustainably. - Dr Ann Agnes Mathew, Paediatric Neurologist & Neuromuscular specialist
Dr Mathew, who spent many years practicing in the United Kingdom was moved to start the centre when she saw the lack of care and support in India. While the UK has five dedicated centres for people affected by such diseases, there were none in India.
At the opening of the centre, families shared their struggles in finding the right diagnosis and support. Like Prasanna Shirol, Founder-Member, ORDI.
"In my own journey as the father of a daughter suffering from a rare disease, it was made very apparent to me that people suffering from rare diseases have very few centres to go to, for appropriate help and treatment. Most people with neuro-muscular diseases must make do with regular physiotherapists who are not equipped to deal with special cases. With this clinic we hope to alleviate the plight of families and young people going through these circumstances."
For many parents, the presence of an ecosystem that offers support is welcome news.
"Once you come to a platform and share experiences, it helps to build the confidence of a parent who is morally down", said Commandant N V Rama Rao. "It increases your ability to cope with the sorrow you are going through as a family. This is a great platform. "
The clinic will be open on once a week on Thursdays in the second half of the day. This is welcome news, given that rare diseases often go undiagnosed and end up with complications that are entirely preventable.
BY providing timely and accurate diagnosis, and providing international standards of care, these children can lead richer, better quality lives.