This year at the 30th Annual North American Cystic Fibrosis Conference in Orlando we have three sessions just for the online cystic fibrosis community.
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For those of us without a medication that targets our cystic fibrosis mutation, it's important to remember that our life with CF is a marathon.
Being a part of the CF Foundation has given me so much more than I could have ever imagined. That is why my wife, Nanette, and I have made a commitment to people with cystic fibrosis for years to come by making a legacy gift, an enduring statement of our values.
Each time we meet, I am reminded that quality improvement in CF care cannot happen without the insights of people with CF and their families.
My oldest son, Nathan, was 18 years old when he was finally diagnosed with cystic fibrosis. While we both had been waiting a long time to get an answer to what had been plaguing him, I'd been hoping and praying that he'd escape the CF sentence. The diagnosis, however, did not come as a surprise because exactly 35 days earlier, my younger son, Caleb, at 14 years, had already been diagnosed with CF.
Hollywood often portrays people with serious illnesses as brave, inspirational characters. I don't always feel that way, and sometimes the real "fight" is facing that fact.
Listening to my body -- and hearing what it has to say -- is not always what I want to do, but what I need to do.
There are no easy remedies for the perpetual dance that the parents of a chronically ill child do to deal with the painful and enduring isolation. And personally, I found a sense of hopeless defeat.
Some days, the biggest struggle I have is accepting that I have CF.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.