Friday, May 15, 2015

CF Awareness Post Question Day 15

What's the one biggest misconception you get when people hear you have CF?

A lot of people in the non-medical world have never heard of CF before so they have no real misconceptions.  Most of the time they are a clean slate.  Which is of course good and bad! 

Occasionally someone will have a friend whose friend’s child has it so they have heard of it.  Then the misconception is that I am an adult and alive.  Sounds crazy, but CF is portrayed as a childhood disease so people assume it’s a childhood disease and there are no adults with it.  But in 2013 49.7% of people with CF were over the age of 18 (the CF annual report comes out the following year, so we don’t have 2014’s yet).  CF is NOT a childhood disease anymore.  The stats are almost 50/50 thanks to advancements in treatments.  Even in the medical field I have run into nurses who are surprised I am alive and still have my original lungs!  I always give the benefit of the doubt, especially if they are in a field where they may not see CF at all or all that often, and take the chance to educate them on how adults are alive and well living with CF.  But this is something that adults are working with the CFF on.  We want to be portrayed too.  But kids bring in donations and donations are needed to make those kids in to adults. 

Another is that I must be really healthy if I am still alive.  Not true.  The body can endure a lot, CF is a good example of this.  Just because I am 34 and have my original lungs does not mean I am healthy.  Remember, 35% lung function is not good.  It’s not horrible, but it’s not good lol.  For where I am in my disease progression I am healthy, but compared to the average Joe, I am not :)

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