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Antonio J. Pérez Pulido, Profesor Titular de Universidad e Investigador en Bioinformática, Universidad Pablo de Olavide

I suffer from the world's most beautiful disease - and also the most expensive to treat

file lf uz Kateryna Kon / Shutterstock

My name is Antonio and I suffer from spinal muscular atrophy (SMA, for friends). My life expectancy was only a few years when I was born, almost half a century ago. And all because I “got” a rare, neurodegenerative disease, which is among the genetic diseases with the highest associated mortality.

What happens, simply put, is that my motor neurons (the “cables” that link the spinal cord to the muscles) gradually degenerate and end up dying. This has kept me in a wheelchair for most of my life. And over time, the involvement of the respiratory muscles can lead to the fatal outcome.

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