Get-hooked August 23, 2018
NGO Yetram’s mission is to fill a critical gap in awareness & support for people with muscular dystrophy
For Roopa Rajendran, living with dwarfism, has meant losing out on access to basic rights that most others take for granted. Like dropping out of school when she was just 11 years old as she could not enter classrooms or the school toilet easily.
Experiences that have motivated this 35-year-old from Chennai to start Yetram, an organization dedicated to support and enable people with muscular dystrophy to fulfil their dreams.
Even though I grew up in a metro, something as basic as going to school was a struggle because of my physical disability . Someone had to carry me to school but even inside the school, getting to the classrooms on the higher floors was a struggle. So was going to the toilet, so I had to drop out – Roopa Rajendran, Co-Founder, Yetram
Muscular Dystrophy (MD) is a group of diseases where there is a mutation in the gene that produces the protein which is important for developing healthy muscles. It is a condition that leads to the steady weakening and wasting of muscles. It largely affects boys and symptoms usually surface in childhood. There are many of MD, with Duchenne Muscular Dystrophy (DMD) the most common in India.
There are chances that over five lakh children are affected by this genetic disorder in India. That’s a significant number, yet awareness is poor and that means there is little support as well.
Take Tamil Nadu for instance. There are six centres for treating MD in the state, but only one for DMD patients, where it is referred to as orphan disease since there is such little attention given to it.
Lack of awareness means many children are given ayurvedic massages or tablets for bone growth instead of proper treatment. These are the shortfalls Yetram plans to address.
Yetram also plans to support by offering wheelchairs and other assistive devices so people with MD can lead independent lives. Also, in the pipeline is a physiotherapy center in Erode and a school for children with disabilities where they will be educated for free.
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