Long COVID Breathlessness
– By Aoife Rafter I was doing so well, isolating and laying low the past 2 years when COVID cases spiked in my local area. I was the only one out of my family and friend who hadn’t contracted the virus, despite being a close contact 3 times! But then …
Why I Don’t Remember or Celebrate the Date of my Double Lung Transplant
– By Tina Clarke Most people with CF who have received a double lung transplant know the date nearly as well as they know their birthday and they celebrate it with cake, balloons or gathering with loved ones. My strange truth is that I don’t even remember the date of …
Two sides of the (CF) coin
Two sides of the (CF) coin – By Alison Smith Living with CF, for me there are almost 2 different worlds, before kaftrio and after kaftrio. Before I was on this new drug my whole life has revolved primarily around my health, hospital life and medication, and the ripple effects from …
Why your ADHD Symptoms Might Actually be Trauma
– By Tina Clarke Results from studies like the TIDES study indicate that the prevalence of ADHD symptoms in children and adults with CF are significantly higher than the rest of the population, as are anxiety and depression. Researchers find some connections between anxiety and depression and whether the patient …
Breathwork for Parents and PWCF (People With Cystic Fibrosis)
– By Aoife Rafter How Breathwork Works I’ve written about Breathwork specifically for people with respiratory conditions on here before, but now I want to teach you how parents, caregivers, and people with CF can use Breathwork for benefits other than improving respiratory health. If the recent global pandemic has …
The Stress of CF in a “Normal” Life
– By Tina Clarke Stress is the number one cause of disease, and although stress obviously doesn’t cause cystic fibrosis, it can make a major appearance in our everyday lives and exacerbate or worsen our symptoms. The vast improvements in average life expectancy in those of us with CF means …
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, …
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 …
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 …
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 …