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 experiences including a comprehensive list of side effects and, why I need to temporarily stop the drug after 4 months due to adverse reactions, here.
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.
What is it that infuriates a chauvinist male more than knowing that a female leads the Scottish National Party? Free period products for women.
On Tuesday, Scotland became the first country to make tampons and pads free for all women and the testosterone driven trolls of Twitter wanted blood shed over the decision, quite literally. Labour MSP Monica Lennon who introduced the bill has been campaigning to end period poverty since 2016.
Young Scot carried out a survey of more than 2,000 people which highlighted that 1 in 4 young girls in education struggled to gain access to period products.
by Emma Boniface
Today, I catch up with Laura, 32, who was diagnosed with Cystic Fibrosis at 4 months old. She is the founder of This is Visibility, an online platform that is dedicated to highlighting hidden disabilities, fighting for equality and snagging some amazing shopping discounts for the disabled from beauty Gurus Look Fantastic to fancy florist Bloom and Wild.
Determined not to let her own disability get in the way of what she wanted from life, Laura completed her History degree and went on to finish a diploma in Law inbetween hospital admissions. …
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 very second she herself was diagnosed with CF at 18 months old. It took years before the pieces of the puzzle started to fall into place.
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. So, after the purge settled down on week 1 I was no longer drowning in green, watery stuff — what happened next?
Catch up on my first week starting Kaftrio, the infamous purge and my top tips for surviving week one here.
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.
I didn’t expect such an impact on day one but by lunchtime something magical started happening. Those two peach, magnolia, washed out yellow caplets that hardly resembled prizewinning pills started stirring stuff up.
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. It has been a long, grueling four months for the NHS staff dealing with an influx of patients being taken ill from this novel virus.
From a cystic fibrosis (CF) perspective, we were, of course, considered “vulnerable” and advised to stay home shielding. Funny, because I really don’t class myself as vulnerable. Anyhow panic stations begun alarming when the big dogs at the hospital started to advise patients to stay away due…
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 addition, a triple combo CF modulator known as Trikafta was approved for licence by the European Medical Agency (EMA) under the new brand name, Kaftrio and, the big wide web is blowing up about it.
CF is an autosomal recessive disorder involving the cystic fibrosis transmembrane conductance regulator (CFTR) gene…
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 I was curious about this thing CF… lets google it and see what the wise, old computer says. What popped up on Google made me look at my whole existence differently…
“average life expectancy of 30"
Glared back at me from the screen. It left a bewildered void filled with…
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.