What I Wish I Knew When I Was Diagnosed With Cystic Fibrosis

– By Aoife Rafter I was actually diagnosed quite late in life with CF, at the age of 9. Up until this point, I was told that I had severe asthma. But once my two younger sisters came along, my Mum knew something was up so we investigated further. Finally, …

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The Trauma of Disease Diagnosis

The Trauma of Disease Diagnosis Written by Aoife Rafter – Inspired by the work of Gabor Mate – The term ‘trauma’ is being thrown around so commonly these days, but what exactly is it and how does it affect us? What is Trauma Many of us experience some form of …

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Three Little Magic Pills And I…and UK CF Care

– by Sarah Leigh Milczanowski HOW IT ALL BEGAN It was back in October 2019 when I was given the incredible news I was eligible to try the then-named Trikafta, at the time I was in second stage respiratory failure using cpap and oxygen and very weak and exhausted. I …

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Why ‘Mental Health’ is a Misnomer in the CF World – by Tina Clarke

– by Tina Clarke I want to talk about mental health and living with cystic fibrosis…or rather I should say I want to talk about our body and how “mental health” is a misnomer. I am currently 43 years old with CF and I received a double lung transplant over …

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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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