India, Feb. 28 -- On paper, I am rare. In real life, I am the man waiting in OPD queues, googling symptoms at 2 a.m., and nodding politely when someone says, "But you look fine." Rare feels ordinary - until it doesn't.
I live with Isaacs' syndrome, a rare neurological condition that causes continuous muscle stiffness, twitching, cramps and nerve hyperexcitability. In simple terms, my nerves forgot how to relax. In India, that almost sounds like a personality trait. But there is nothing quirky about a body that refuses to switch off.
If rare diseases were an Olympic sport, Indian patients would win gold in hospital hopping. I went from neurologists to rheumatologists, orthopaedic specialists to psychiatrists. There were blood tests, EMGs...
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