How to Keep a Healthy Mindset when Unwell with CF

– Written by Aoife P. R. I was recently discharged from a 2-week stay in hospital. My chest got quite tight and my weight dropped significantly too, so I knew pretty quickly that 2 weeks of IV antibiotics were necessary. To be honest, I was feeling so lousy that I …

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Avoiding Bowel Blockages in Hot Weather

– Written by Aoife P. R. Here Comes The Sun Although I love to see the sun shining and the rain hold off so we can get outdoors to jazz up the garden, hit the beach, go for a picnic, or head for a hike with the dogs, I’ve learned …

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Cystic Fibrosis and Menopause

– Written by Aoife P. R. 28 and Menopausal Okay, so you’re probably wondering why I’m writing about this topic at such a young age. You’re probably thinking, “What could this young person possibly have to tell me about this latter in-life hormonal change?!” And that’s fair, I mean I …

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Why People With CF Need to Know About HPV

– Written by Aoife P. R. My Experience with HPV + Cervical Cancer As some readers may know from my previous posts, I was diagnosed with Cervical Cancer at just 27 years of age. This was a total shock my family and I at the time, as having CF kind …

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The Gift of Time: My Trikafta Journey – by Jessica McDearman

Where I’ve Been After several years of infertility, I was finally living my greatest dream of being called “mama” by two precious little girls. My days were filled with the beautiful, messy responsibilities of motherhood – breastfeeding, rocking tired babies back to sleep in the middle of the night, dancing …

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Trikafta: Worth It? A Personal Story of Before & After – by Molly Baker

Much like the terms used when noting a date, referencing “B.C.” (Before Christ) & “A.D.”(anno domini), I often divide my life as a person with Cystic Fibrosis, or CF, into two parts: pre-Trikafta & post-Trikafta. The first 36 or so years of my life were spent without the development of …

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Trikafta, along with dogged perseverance, saved my life – by James Kain

I was born in Washington, D.C. in 1985, and was raised in a nearby community known as Reston, Virginia. By the time I was born, my older sister had just recently passed away from Cystic Fibrosis at the all too innocent age of eight. To say that her passing was …

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Trikafta’s Life Changing Effects – by Nathan Mundi

Trikafta truly is a life changing drug. My life has improved astronomically since starting Trikafta. I never would’ve thought this soon in my life I would have seen three pills a day take over all the treatments I used to do. Prior to Trikafta, I used to have to be …

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Trikafta, The Equalizer – by Ron Bartell

The Beginning My name is Ron, I am 48 years old, and I was diagnosed at birth with cystic fibrosis.  I was born roughly one month premature and given up for adoption at birth.  As a result of my adoption being finalized in New Jersey in 1977, the records were …

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No Longer 18 Years – By Ashley Wilson

“She might make it to 18 years old if she is lucky.” “She might make it to 18 years old if she is lucky.”  This is what the doctor told my parents after finally receiving a diagnosis for my failure to thrive as a baby. At 6 months old I …

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