I showed them our CF story video and walked them through some of the genetics of cystic fibrosis, an autosomonal recessive disorder. We talked about what CF does to the transfer of water and salt in mucus-producing cells and which organs are affected. And then we got into some of the issues involved with CF: the decision whether or not to have more children, educating family members (potential CF carriers) about the disease, living in a state where 1 out of every 5 males smokes, and the costs of medication and the necessity of insurance even if you aren't happy with the job that provides it.
Perhaps the most exciting part of my presentation was talking about the current drug research and what we can do to help fight CF. I invited the students and their families to walk with us in Great Strides on Saturday, May 21st. How exciting it would be to have part of FSA High School represented in our team this year?
As part of my presentation, we talked about lung transplantation for CFers with advanced lung disease, and I'm super grateful to Leah, a fellow member of CysticLife, who allowed me to show the students this picture. She had a double lung transplant and got to "visit" her old lungs in the surgery pathology room. You can read her post about it here. It's now been a year since her transplant, and she is rejection free! Congratulations Leah!
Students were shocked by the amount of pills Peter takes everyday just to digest his food. I also show them the rest of Peter's medication. They're pretty amazed that a kid who's only 3 years old takes so much.
I bring the Vest machine and nebulizer to demonstrate some of Peter's treatments. Students like putting their hands in the Vest to feel it when the machine is on.
So, even though there was quite a bit of coordinating to do--I had to take Peter to and from different babysitters throughout the day and cart around Peter's Vest and neb machines--it was totally worth it. I'm hoping I'll be able to speak about CF in other venues as well.