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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