My Colonoscopy Wasn’t so Crappy!

Full disclosure, I had a healthy dose of Propofol about 3 hours ago, so what follows is, well… the best I can do. If you visited my page yesterday, you know that I had my first ever colonoscopy today. To recap, people with CF need to get colonoscopies younger than the general population because there...
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So… I Am Getting a Colonoscopy Tomorrow

Did you know that when you have CF, you’re due for a colonoscopy much earlier than the general population? Kind of shitty, right? The reason that’s the case is because there’s an increased risk for colorectal cancer in the CF population. I know… I know… it sort of feels like we keep losing the lottery...
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Applying to School? Own Your Cystic Fibrosis

I think it’s quite common for kids with cystic fibrosis to dedicate part of their college applications to their lives with CF. I think it’s a great subtopic because it’s who we are! So, as the next wave of kids with cystic fibrosis closes up their junior years of high school, prepares for senior year...
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Address the Unseen Scars: Mental Health and Cystic Fibrosis

I am reblogging this article that I wrote for Emily’s Entourage, which originally appeared HERE. What is Emily’s Entourage? “Emily’s Entourage accelerates research and drug development for nonsense mutations of Cystic Fibrosis. By providing critical leadership and coordination, Emily’s Entourage drives high-impact research, cultivates multi-stakeholder collaboration, and facilitates information exchange to speed breakthroughs. [Their] goal...
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Parents, It’s Okay to Let Your Kid Grow Up

Shifting age appropriate responsibilities from the parent to the child always seems to be a difficult task for cystic fibrosis families. It’s a slow methodical process that seems to work at a snail’s pace. I think it’s due in large part to the dreaded drop that many young adults are forecasted to face. This week...
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