I have cystic fibrosis but experts say drugs for others like me are too expensive. What price a life? | Johanna Tate

This medicine comes closer to a cure than any of us could dare to dream of. The planned cut in funding would be a disaster

When I was born in 1990, the life expectancy of people with cystic fibrosis was about 40. I was diagnosed when I was just six months old, and my parents were told then their daughter would have a very different kind of life.

Cystic fibrosis (CF) is a genetic disease that causes the body to produce thick mucus, affecting mainly the lungs and digestive system. Growing up, my condition had been well managed, but in my 20s that changed and I began to deteriorate. I remember not knowing what my laugh sounded like, because whenever I found something funny I would descend into a painful coughing fit, rather than a fit of giggles. I remember the hours of physiotherapy, my daily medications – each with their own side-effects – and the trips in and out of hospital. But mostly I remember the fear. Fear of the future, fear of leaving loved ones behind, fear of becoming a burden as I continued to deteriorate.

Johanna Tate works at the Data Science Institute at the London School of Economics

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from The Guardian https://ift.tt/iA9QMLh