Alternative MedicineLiving With CFSupportTreatments

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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Living With CFTreatments

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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Living With CFTreatments

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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Living With CFTreatments

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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Living With CFTreatments

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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Living With CFTreatments

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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Living With CFTreatments

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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Living With CFTreatments

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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Living With CFTreatments

It’s a Marathon Not a Sprint – by Nicholas Breton

Approximately 10 years ago, my mother had called me on the phone frantically telling me she had seen a news blurb about a cure for Cystic Fibrosis being found.  She is so hopeful of that day that she is more believing in news articles regardless of the misrepresentations that the …

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Alternative MedicineLiving With CFTreatments

How Breathwork Can Help Cystic Fibrosis

Deprived of a Beneficial Therapy? Although I’ve been in and out of hospitals since my diagnosis of Cystic Fibrosis at 9 years of age, I have never had a CF specialist of any kind teach me the basics on how to breathe correctly or optimally. This sounds a bit bizarre …

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