Not so deep thought of the day – The X Factor in fighting CF

The CF Foundation states that the median age for CF is over 37. They and thousands of volunteers and doctors and CFers and CF families have worked very hard to raise that number.  Every one of these individuals deserves major kudos, including anyone who has contributed financially to fighting CF.

Now here’s my “not so deep thought of the day”: What would the median age be without the Internet?

Would it still be over 37 years?

Think about how complex this disease is and how opinions vary on treating it. Think about how important sharing information is in fighting CF. Think about how comforting it is to communicate with others who have this isolating disease.

Without the Internet would we know the best order of nebs? The best CF Centers? The best alternative therapies?

Here’s my question of the day: Have we realized the full potential of the Internet in fighting CF?

I don’t think we have.

I believe the Internet will help us fight this disease in new and creative ways we haven’t yet imagined, or yet implemented.  And I wonder what they will be. I wonder. I truly do.

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6 thoughts on “Not so deep thought of the day – The X Factor in fighting CF

  1. Nice post! I’ve only recently discovered the benefits of befriending other CFers on the internet. Until then, I was truly isolated. Now I have friends that understand my situation and we can learn from each other!

    Let’s learn and help each other out and kill that 37! I’m 42 and demand many many more years 😉

    • You and I are close in age. I had the same sense of isolation growing up. There were no CF role models at the time. No one lived that long. I felt like a mutant.

      I, too, will do my best to push that number up.

  2. Without the Internet, there would be less sharing between patients from various CF Centers who receive wildly different care because of their doctor’s protocol. I’m sure I’ve improved my situation since reading Sickboy and starting my own site.

    • “Wildly different care.” Well said. That is what amazes me day in and day out – how there are so many ways to treat this disease. It doesn’t always make sense. I know the Internet has improved my lifespan. Cysticfibrosis.com has yielded a ton of good information.

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