Saturday, January 29, 2011

Here it comes again

Yeah, in another 'I hate CF' mood.
went to a friend's funeral last night.
I did ok for the first few mins.
but it didnt last. I cried for about 1 1/2hrs straight.
and as we all know crying always makes breathing more difficult.
so of course I had a bit of an episode. started wheezing and gasping in the back of the room.
and I'm the idiot that left her inhaler in the car.
a random lady handed me a tissue, which didnt help the breathing situation, but it gave me something to squeeze. which helped.

one thing the deacon said hit me. he said "there is no good age to die, but 25 is way too young"

and its so true.

CF, you need to take a time out and think about what you've done.
because as it stands now, the median age for someone with CF is 37. this means that 50% of people with CF will die before that age.

with CF walk-a-thon season quickly approaching theres never been a better time to get the word out about CF. its time to get more people aware. more people donating. so that more research can be done to prolong the lives and eventually cure those with Cystic Fibrosis.

Picture I made in memory of Tina <3


Instructional video about CF patients that Tina & her father were asked to participate in. She does a fabulous job, and her father really hits hard on the reality. its about 20mins. but its worth the watch!!

My GreatStrides donation page.


Jess said...

I'm sorry Kate. I will make a crane for Christina

Anonymous said...

Hmm I don't even know what to say, I couldn't imagine being in that situation. However, that being said I wanted to correct something that came across as incorrect to me. The median age being 37 for CFers does NOT mean that 50% of us will die before 37, it simply means that at this current time half of CFers are under the age of 37. The other half of us are over 37. With medicine moving so fast they don't have the results to predict an average death age for CFers, therefor the say what the average age of life is. Sorry if this wasn't the place to be corrective :/ Hope the best for you!

Anonymous said...

ehhh I got that factoid from the video. so thats why I said it.

Alysa said...

Dan: It is true that 50% of people with CF die before the age of 37.4. It's not that 50% of CFer's are younger than 37 and 50% are older. Here's what CFF says:
In 2008, the median predicted age of survival rose to 37.4 years, up from 32 in 2000. The median predicted age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2008.