Rashmi Rungta gives an insight into her life with myasthenia gravis – a rare long-term condition that causes muscle weakness.
Born in 1970 in Kolkata, a sprawling city in the east of India, my family witnessed the very first symptoms of myasthenia gravis (MG) when I was just six months old. After a fall, I turned blue and eventually my eyes started to droop. I also started to get breathless during breastfeeds and was floppy. As these were unusual symptoms, it made my parents very anxious. They started to seek several medical opinions and treatments, including homeopathy. The treatments helped slightly but the symptoms persisted. I was diagnosed with MG by the end of the year and additionally cretinism and hypothyroidism two years later.
As necessity is the mother of invention, when my eyes drooped, I would use my left hand to lift my right eye and play with my right hand, which resulted in peripheral vision only in my left eye, since it remained closed.
When I turned seven, I underwent a thymectomy at the UCLA hospital in the US and at 10 years, became a research patient in NIH Bethesda as it was unknown to have autoimmune-acquired MG as a six-month-old. I was treated by renowned neurologist Dr W K Engel.
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