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Why I Don’t Remember or Celebrate the Date of my Double Lung Transplant
– By Tina Clarke Most people with CF who have received a double lung transplant know the date nearly as well as they know their birthday and they celebrate it with cake, balloons or gathering with...
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Long COVID Breathlessness
– By Aoife Rafter I was doing so well, isolating and laying low the past 2 years when COVID cases spiked in my local area. I was the only one out of my family and friend who hadn’t contracted the...
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Patients and advocacy groups take legal action against Trikafta patents in...
Activists are pressing governments in low- and middle-income countries to open up access to generic, more affordable versions of Trikafta/Kaftrio. Vertex Pharmaceutical’s drug is recognized as a major...
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Emotional Regulation & Resilience Living with CF – By Tina Clarke
Emotional regulation is defined as being able to “control” our emotions so that they stay within a manageable range of intensity for us. But what does it mean if we don’t feel in control and our...
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Living For Longevity – by Ashley Wilson
“If you have the aspiration of kicking ass when you’re 85, you can’t afford to be average when you’re 50.” -Peter Attia As CFers are living longer, fuller lives this sentiment from Peter Attia rings...
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All in God’s timing – by Ashton Barton
Hello, my name is Ashton Barton. I’m 35 years old, wife to a good Godly man, and a mom to not 1, 2, 3, or 4 but 5 beautiful babies. My husband and I got married on October 9, 2010, which I was 22 years...
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Leaving a Legacy That Lasts – by Jessica McDearman
As a young child, I dreamed of one day having a little girl to call my own. I practiced swaddling and rocking my favorite stuffed animals all the while carrying her name tucked away in a secret place...
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Life is Good! – by Kevin Munroe, 65 years young
*Note from the editor: Meet Kevin, a 65-year old “Grampy” with Cystic Fibrosis! My first thought was: I bet he has some interesting stories to tell! Well, for his article Kevin submitted a delightful...
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Parenting with Cystic Fibrosis – by Megan Mancuso
Deciding to Get Pregnant The choice to have children is filled with uncertainty. What if my baby is born with higher needs than usual? What if I lose my income? How can I promise to provide for this...
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My Journey with Cystic Fibrosis: Overcoming Obstacles and Embracing Self-Care...
Life-Changing News Hello there! I’m Zain Arif, a 19-year-old who’s been living with Cystic Fibrosis (CF) since I was just a baby. Being diagnosed with CF wasn’t easy, especially in a country where the...
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