Thursday, May 14, 2015

CF Awareness Post Question Day 14

How old were you when you were diagnosed and what indication was there that lead to being tested?

I was 5/6 when I was diagnosed.  I was small for my age and I had what the doctors thought were bad allergies.  I also ate like my 200lb father and gained no weight.  And thanks to malnutrition, I had that bloated belly you see on the help feed the world commercials.  I did not digest anything so my bowels were a mess.  I coughed a lot, a junky cough.  My mom can tell you more about all of that since I can only relate what I remember being told.  My local pediatrician told my mom to get me tested since he thought I had CF.  This was after all the good hospitals in Philly told my mom I had allergies.  So I was given a sweat test which is the gold standard for CF.  Anything over 60 is positive for CF and mine was 162!  What a sweat test does is determine how much salt is in your sweat.  CFers sweat salt.  In the summer I am a horses dream, a salt lick.  This has to do with the CFTR mutation and the passing of sodium and chloride across the cell channel – too much science that I only vaguely understand lol. has all of the scientific details if you want to read up on them.  Now luckily, most states have newborn screening which catches almost all new cases right at birth.  Getting ahead of the game is very important and now parents don’t have to wait until there is something wrong to begin treating; they can start immediately and have a lot more hope of a normal life for their CFer.

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