My name is Iris. I love pokemon, cats, my little sister, spending time with my family, and playing make believe. I have an extremely active imagination, and love to read books about adventure. I have ADHD and love running, jumping, leaping, climbing, and basically moving my body. I also was born with Cystic Fibrosis.
I carry the DeltaF508 gene and a 5T variant that is considered a "wildcard" gene which can be disease causing or not - in me it does cause CF.
I am a pokemon master. I absorb all pokemon knowledge and will devote time to educate anyone I can about my favorites (Lugia is amazing!). Pixelmon and Pokemon Go! are some of my favorite games to play.
My pancreas flip flops between sufficient and insufficient. When my pancreas is insufficient I take approx. 425 enzyme pills a month, on top of my maintenance medications. I will also have to worry about Cystic Fibrosis related diabetes because of this malfunction in my pancreas, and actually start sucrose tests this year, and yearly for the rest of my life.
I get up at 6:30 am daily to be able to do my treatments to maintain my health before school. With my genetic modifier medications I need to have at least 10g of fat for it to bond too and be absorbed into my system. To keep my body is top condition I need a lot more calories and salt then other people do - because I sweat my salt out of my pores faster then other people, and my body works harder to do basic functions.
While healthy I take 7 pills, 8 inhaler puffs, 1 nebulized medication and do 2 treatments daily. When sick treatments are increased to 4x daily with additional medication and nebulizers. Each breathing treatment takes 35 minutes.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.