CF Education Day
I attended my first CF Education Day on Saturday, which was held by my CF Center in Augusta, Georgia. I had the privilege to be one of the patients asked to be on the panel to discuss and answer questions about my experience with CF. I wasn't really sure what to expect or who all would be there, so I asked some of my family to tag along with me. Will, my mom & brother Taylor joined me for the day (had a last minute cancellation, won't name any names, but you know who you are!).
The day started with some Jeopardy! The room was divided into groups and we answered trivia questions about CF topics...I must say our team was awesome! It was a fun interactive way to break the ice and get the room talking. Then, we had some sessions on CF Research, which is always exciting to hear about. They discussed the VX-770 and VX-809 drugs that are in the works - fingers crossed they are approved by the FDA for patients soon! Then, my doctor spoke and shared some statistics about the CF Center I attend. I'm happy to report my PFTs are above average in the adult group - go me!! And the last thing before lunch was a session discussing stress and the effects it can have on illness. However, it was very interesting and anyone could relate it to their life whether they have an illness or not.
We broke for lunch and returned for the panel. I was the oldest CF patient on the panel, but not the oldest there (there was a gentleman that was 52 & looked extremely heathly - he was diagnosed at 10 months and there was another gentleman in his 40s!). There was also girl about my age there that was pregnant! So, lots of hope for us CFers.
Back to the panel...there were a few parents on the panel with their kids (2 college guys & 1 high schooler) and then some other parents with younger children. One couple had a 15 month old that had been diagnosed at 3 weeks, thanks to the fabulous requirement that all newborns are now tested for CF at birth! They are very new to the disease and you could tell they were still trying to understand it, but were very positive about their little girl & their desire to keep her healthy.
The overall summary of the panel is that we are all normal people trying to live our lives as normal as possible. Kids still play with dirt and have chores, we can go off to college, get married and have a family. Its all about what you do to keep yourself healthy.
Here's a pic from the day of me & my little brother (that's much bigger than me!).
The day started with some Jeopardy! The room was divided into groups and we answered trivia questions about CF topics...I must say our team was awesome! It was a fun interactive way to break the ice and get the room talking. Then, we had some sessions on CF Research, which is always exciting to hear about. They discussed the VX-770 and VX-809 drugs that are in the works - fingers crossed they are approved by the FDA for patients soon! Then, my doctor spoke and shared some statistics about the CF Center I attend. I'm happy to report my PFTs are above average in the adult group - go me!! And the last thing before lunch was a session discussing stress and the effects it can have on illness. However, it was very interesting and anyone could relate it to their life whether they have an illness or not.
We broke for lunch and returned for the panel. I was the oldest CF patient on the panel, but not the oldest there (there was a gentleman that was 52 & looked extremely heathly - he was diagnosed at 10 months and there was another gentleman in his 40s!). There was also girl about my age there that was pregnant! So, lots of hope for us CFers.
Back to the panel...there were a few parents on the panel with their kids (2 college guys & 1 high schooler) and then some other parents with younger children. One couple had a 15 month old that had been diagnosed at 3 weeks, thanks to the fabulous requirement that all newborns are now tested for CF at birth! They are very new to the disease and you could tell they were still trying to understand it, but were very positive about their little girl & their desire to keep her healthy.
The overall summary of the panel is that we are all normal people trying to live our lives as normal as possible. Kids still play with dirt and have chores, we can go off to college, get married and have a family. Its all about what you do to keep yourself healthy.
Here's a pic from the day of me & my little brother (that's much bigger than me!).
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