Adverse reactions associated with Kaftrio/Trikafta have been the hot topic of conversation among the global CF community recently. As more and more patients use the superhuman pills, many are experiencing neurological and mental health side effects that were not listed from the trial data.

I share about my own Kaftrio/Trikafta…


Last time I put a Kaftrio post up was in the very first couple of weeks into taking those miracle little pills. And yes, they are miracles.

Yet, this week, I stopped Kaftrio after being on it for 4 months.

This post is going to explain why.

The Wonders Of This Drug


by Emma Boniface

Today, I catch up with Laura, 32, who was diagnosed with Cystic Fibrosis at 4 months old. …


by Emma Boniface

Today, I chat with Lana who has been on a lifelong healing journey since losing her younger brother, Josh, to cystic fibrosis (CF) in 2013. This left Lana with feelings of profound loss, guilt and deep-rooted wounds.

Looking back, Lana feels her emotional stress started from the…


Today marks four full weeks since starting Kafrtio.

The new wonder drug that has taken the global Cystic Fibrosis (CF) community by storm. Many CF patients have reported reduction in cough, no mucus and increased lung function. …


11th September, 9:30am I washed down my first Kaftrio dose with two bottles of fortisip compact. That’s 18g of drinkable, supposedly flavorsome fat for those who are wondering. This was a breakfast fit for CF champions.

4 Hours Later…

I didn’t expect such an impact on day one but by lunchtime something magical…


3rd July 2020, we are just out of the crux of the first wave of a global pandemic that swept through the UK during spring and early summer. …


Back when a US based medical science company, Vertex Pharmaceuticals took a big leap of faith by investing time into developing orphan drugs for rare diseases such as cystic fibrosis (CF), little did the world know just how life changing their modulator seeds sowed would be.

Recently, the newest Vertex…


It’s 18th of June and 7 days until my 32nd Birthday. I am officially defying the odds for somebody born in the 80’s with Cystic Fibrosis. So, lets rewind a bit…

Twelve year old me had the big wide world web at my hands on a 90’s Microsoft PC and…


It is no secret that I struggled with treatment adherence and chest physiotherapy over the years, I would go to great lengths to avoid anything “huffy and puffy”. Cleaning the loo felt more enjoyable than squeezing a Pulmazyme in when I had free time.

Like all reformed people — now…

Emma Boniface

Just a thirty something girl aspiring to be a writer with some exceptionally dodgy lungs, a few other chronic niggles and a wicked sense of humour.

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