Hypotonic Sclerotic Muscular Dystrophy Treatment in India

Emma Iyer, a 28-year-old architect, was...

Emma Iyer, a 28-year-old architect, was diagnosed with Hypotonic Sclerotic Muscular Dystrophy in her late teens. The progressive weakness in her trunk and paraspinal muscles led to a severe, painful thoracolumbar scoliosis that worsened each year. By her mid-twenties, the 85-degree curve was crushing her lungs, causing shortness of breath even at rest, and chronic nerve pain radiated down her legs. Her spine surgeon, Dr. Mehta, recommended a posterior spinal fusion from T4 to L4 to halt the curve's progression, stabilize her spine, and relieve the pressure on her organs and nerves. The 10-hour surgery was daunting, but Emma focused on the goal of reclaiming her ability to sit comfortably and breathe easier. Her recovery in the hospital was challenging, involving careful pain management and the beginning of gentle physiotherapy. A year later, Emma's spine is stable, her lung capacity has improved, and the debilitating nerve pain is gone. While she still lives with muscular dystrophy, the surgery freed her from the prison of her collapsing spine. Emotionally, she moved from a place of fear and resignation about her declining function to one of immense relief and renewed agency. She is now adapting her home and work life around a stable, straighter spine, feeling hopeful about her future for the first time in years.