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The Road Less Traveled

Dark sideOr rather, “never before traveled.”

The road I’m referring to is the one we’re on, as active, positive members of the CF community. I am/we are standing on the shoulders of giants who figured this stuff out a while ago: that you can not only live well with CF but actually improve your health as you get older to reverse the stupidity or bad/unknown medicine of the past. I’m not the first, nor the last to realize this and mobilize people into changing the standard of thinking about cystic fibrosis, but we as a group are the first to do so because there once was no hope. We are a collection of just a couple of generations of people who have a chance to have a different relationship with CF than any before us.

Hope for the hopeless

There was a day when your child simply died after a few days or months. If they were older, they were undernourished. If they were a newborn and an autopsy was performed, they were full of crap. The next advancement was being somewhat nourished for a time, but succumbing to pulmonary failure by 7 or so. Today, given the right genes, medicine, and attitude, we have CFers in their 50s that still haven’t needed a transplant.

While not true for everyone, there is a growing trend of seeing people into their 30s, 40s, and beyond before their lungs cry out that they have given out. [Read more…]