Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest? Luke 12:25-26

Thursday, June 24, 2010

Mild vs. Delayed

I read an article late last night, posted by Jerry Cahill (his website) on facebook. Here is the link to the article.

This article really intrigued me. In case you don't want to read it, here is the basic overview: A woman, at age 50, was diagnosed with CF. She has an "unusual" CF gene and the doctor they interviewed said it was the cause of her late diagnosis. "It's not really mild CF, it's delayed CF." he says. This really interested me.

I too have a unique gene (1078delT) and had a very healthy childhood. If I'm reading this right, that means possibly that my CF didn't kick in until later in my life. Obviously it wasn't waiting until age 50, but maybe age 13. The article mentions that this lady had lung problems and sinus infections, but obviously not to the extent of CF or she would not have fared so well for so long without the daily treatments and regimens CFers adhere to daily. Could this have been me too?

I'm starting to believe that it was. We have always said things like "she has mild CF" or "she just had an unbelievably healthy childhood!". These things, and my years of nearly perfect checkups and scarce infections actually agrees with the theory that my CF didn't become a full-fledged disease with all the modern-day CF problems until I was older. However, also stated in the article, that (paraphrased) those who were diagnosed later in life [or had delayed CF] still deteriorated as quickly as those diagnosed at birth [or had punctual CF].

The only thing that gets me is that I was diagnosed at birth, despite my extremely healthy childhood. The meconium ileus was the indicator and the sweat test was the confirmation.

So while whether I had delayed CF or not doesn't change anything for me, it certainly had me do a second glance at my past.

Another thing I've thought about before.... which is worse: having to do this CF thing your whole life or at age {x} having it thrown at you and have to start from there? I mean, I guess it really just depends on how you look at it. Having it from birth sucks because there's never a time where you didn't have to pop pills or remember to get treatment in before spending the night at a friend's house. However, the benefit is that this lifestyle is familiar and unchanging, always to include meds, The Vest, breathing treatments, and the occasional clean-out. On the flip-side, those diagnosed later in life have those days of freedom of the rituals of CF. Also, they get an answer as to why they have become so sick. However, that's not exactly a cheerful answer and now their lives have been completely altered and they must find a new daily ritual including those all-too familiar with those with a lifetime CF membership.

So I guess they both balance out. *shrugs* Bottom line, CF sucks for everyone!!! haha

-Annie

1 comment:

Staceyb123 said...

Hey! That article really made me think too. I have a rare genotype, but was diagnosed when I was two. I am just having my first tune-up (starting tomorrow) and I am 24 years old. The only thing that sucked about the article is that I was hoping the the evidence showed that it was people like us who are assured a much longer life expectancy. I was kinda bummed that it pretty much said it would eventually catch up with us :-( Hopefully, they prove that wrong someday.

Stacey
www.confessionscyster.blogspot.com