A long list of medical conditions can be considered invisible because others can’t see their effects. Those of us living with cystic fibrosis (CF) understand the idea well since we commonly hear “You look well!” or “You don’t look sick,” even from people who know we have the…
In 2014, when my daughter was entering her freshman year of college, I watched a segment of the TV news program “60 Minutes” that changed my life. In the segment, presenter Anderson Cooper reported on a mindfulness retreat he attended led by Jon Kabat-Zinn, often considered the…
Labor Day weekend means many things. It celebrates the achievements of the American worker while also marking the end of summer vacation and the start of a new school year. And to me, it’s the anniversary of my double-lung transplant. Three years ago on Labor Day weekend, I received…
Having two rare mutations that cause my cystic fibrosis (CF) has been a small blessing for me. It’s true that I’m unable to participate in many clinical trials that might have given me access to new medications; that’s because I don’t have a copy of the…
In 1994, I was 24 years old and engaged to be married. My health was good despite my cystic fibrosis (CF). My doctor hadn’t mentioned anything about family planning, so I decided to move forward with my life. A month before our wedding, my husband-to-be and I stopped…
My mother was recently cleaning out her attic, trying out the minimalist technique she’d seen on a Netflix show. In the process of deciding which items still bring her joy, she gathered a bag full of my school papers from childhood. Forty years later, she still couldn’t bring herself to…
As a new columnist for Cystic Fibrosis News Today, I welcome you to “Living Beyond.” I come from a time when the life expectancy for someone born with cystic fibrosis (CF) was around 11 years. At that time, the only medicines prescribed to treat CF…
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