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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Getting Comfortable with a New CF Clinic

All throughout my life, I have sought CF care from a number of clinics simply because I have lived in a bunch of different places. Experience tells me that transitioning from clinic to clinic is equal parts awkward, uneasy, exciting, refreshing and hopeful. When I was little, I started my CF journey at Cincinnati Children’s...
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Stop Calling Me a “Fibro”

Today, folks, we’re going to talk about labels and why they’re bad.  The terms “fibro” “cyster” and “CFer” are all labels that get tossed around the CF community. I don’t like them. In fact, I feel second hand embarrassment when someone uses any of the above to describe other people with CF. In a world...
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