Living a Medical Miracle: CF Today and Tomorrow

by on August 3, 2008
in general

I thought it would be appropriate to launch my new blog the day I returned home from probably the most exciting CF conference I have attended.  While many of you may have read some of my articles on wellness and exercise before, the purpose of this blog is somewhat more selfish…it gives me something to do while inhaling hypertonic saline.  In fact, I almost called it “The Saline Chronicles,” but I wasn’t sure how to to search engine optimization with such a domain name.  “Sick and Happy” is more appropriate, because my goal with all this writing is 1) to create help, both with words and with audio and visual assistance, for PWCF to begin and maintain lifestyle practices which will improve quality of life  (after all, isn’t that what we are here for?), and 2) wax prolific on my new favorite subject: how to use the rapidly growing and amazingly popular field of positive psychology to live better in our bodies, such as they are.

Tiffany Christensen, author of “Sick Girl Speaks!” gave an amazing presentation at the start of this weekend’s conference in Redwood City, California.  As she chronicled in a deeply moving and occasionally hilarious one woman show, having CF can be an incredible tool to use when “finding the permanent me.”  Tiffany embodies positive psychology.  It is people like her that I want to learn from, and write about in these posts.  

But before I do that, I first want to describe why this conference was exciting. The bottom line is that there are some amazing new drugs making their way through clinical trials right now. The two I am most intrigued by come from Vertex Pharmaceuticals, and are showing incredible promise.  I never really have believed that there would be definitive treatment for CF in my lifetime, but now I really am starting to wonder.

This makes it even MORE important to do everything in our power now to keep as healthy as we can, using as many techniques as we can.  This blog is another channel through which I hope to communicate  that your future is more in your control than you may think! As my former Pathology mentor, Klaus Bensch used to say, “A scar is a scar is a scar!”  He was of course not referring to CF lungs, but a general principle throughout the body.  It is impossible to revert scar tissue to functional lung tissue.  Therefore, it is even more essential now than ever before to do everything you can to slow down the inflammation↔tissue damage↔infection cycle now.  When a treatment that corrects the basic defect arrives, the more functional lung tissue that you have, the better off you will be for the rest of your life.

So I intend, through this blog, to  use my background as a person with CF, as a physician who understands the pathophysiology of CF more than I probably should, as a fitness fanatic and personal trainer, as an executive wellness coach, and, mostly, as an “old survivor” at almost 48 years old to talk about how to keep on top of your game until that great day comes when you’ll take a pill to move your CFTR to the cell membrane, and another pill to make it work better!

To learn more about me and my coaching services, check out  Until tomorrow, smile, a New Day is coming!

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