Living With CFResearchResourcesSupport

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 …

Living With CFResourcesRespiratory DiseaseSupport

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 …

Alternative MedicineLiving With CFResourcesSupport

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 …

DiagnosisLiving With CFResources

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, …

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 …

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 …

Living With CFSupport

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 …

AdheranceLiving With CFSupport

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 …

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 …

AdvocacyAlternative MedicineLiving With CFResources

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 …