Living With CFResourcesSupport

Emotional Regulation & Resilience Living with CF – By Tina Clarke

Emotional regulation is defined as being able to “control” our emotions so that they stay within a manageable range of intensity for us. But what does it mean if we don’t feel in control and our emotions seem to feel too much? When living with CF it is pretty common …

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 …

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 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 …

FinancialLiving With CFResourcesSupport

SSDI for people with Cystic Fibrosis

Does Cystic Fibrosis Qualify as a Disability for SSDI? Learn more about SSDI and Cystic Fibrosis. Article written by Danielle Roberts, a Medicare insurance expert. You can learn more about her and her team at *** About 30,000 people have cystic fibrosis in the U.S., according to the Cystic Fibrosis Foundation. As …

Living With CFSupport

Coping with the Loss of a Spouse from CF

Guest Blog We strive to be optimistic about life with CF, but loss of a loved one is a harsh reality.  A  member of our community reached out to us at in hopes of sharing his experience as a spouse of someone who lived with CF. Jesse and Ashley’s Story …


The Unidos pela Vida Institute – spreading knowledge about Cystic Fibrosis in Brazil

Join us today as we learn more about the Unidos pela Vida Institute for Cystic Fibrosis in Brazil. Thank you to Verônica Stasiak and Pamela Mazini Stürmer for supplying us with the below information, translated to English. We wish them good luck with the great work they are doing to spread awareness …