India’s first Pompe patient bedridden now

  • | Friday | 21st September, 2018

Though Nidhi’s teachers assisted her, the machine failed to restart and she slipped into a coma,” Sharada recalled.Nidhi spent nine months in hospital and was brought home three months ago. “Nidhi used to manage the wheelchair, ventilator and suction machine on her own. BENGALURU: She was the first patient in India to be diagnosed with Pompe , a rare disease that results in debilitating and progressive muscle weakness. On September 21, 2017, the teenager was participating in ethnic day celebrations in the college when she noticed the ventilator was malfunctioning. Hypoxic brain damage is not a completely reversible condition,” said Dr Gnanam Ram, in-charge, paediatric emergency unit, Manipal Hospitals.

BENGALURU: She was the first patient in India to be diagnosed with Pompe , a rare disease that results in debilitating and progressive muscle weakness. Not one to be bogged down, wheelchair-bound Nidhi Shirol , 19, carried a ventilator and a suction machine with her as she joined a B Com course.The ventilator was connected to her trachea to create air pressure to pump oxygen. On September 21, 2017, the teenager was participating in ethnic day celebrations in the college when she noticed the ventilator was malfunctioning. Before things could be set right, she was confined to bed as she was suffering from hypoxia , a condition caused by low supply of oxygen to the brain.Nidhi’s mother Sharada recalls that her daughter was dressed at her best for the ethnic day celebrations. “Nidhi used to manage the wheelchair, ventilator and suction machine on her own. I would drop her to college and pick her up. She was a good student. I was waiting outside the college gate when she found there was a problem with the ventilator. Though Nidhi’s teachers assisted her, the machine failed to restart and she slipped into a coma,” Sharada recalled.Nidhi spent nine months in hospital and was brought home three months ago. She is fed liquid food through a tube. The ventilator is connected to her trachea, and her heartbeat and BP are constantly monitored through another machine.The girl does not respond to her parents’ call. “She sometimes responds to touch and rolls her eyes. She notices when her father arrives from office. We don’t how long will it take for her to get better but haven’t lost hope,” Sharada pointed out.“Nidhi has recovered from coma. She is making small movements like blinking and rolling her eyes. We have to wait and watch her condition. Hypoxic brain damage is not a completely reversible condition,” said Dr Gnanam Ram, in-charge, paediatric emergency unit, Manipal Hospitals.

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