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 …

READ MORE →
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 …

READ MORE →
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 …

READ MORE →
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 …

READ MORE →
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 …

READ MORE →
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 …

READ MORE →
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 https://boomerbenefits.com. *** About 30,000 people have cystic fibrosis in the U.S., according to the Cystic Fibrosis Foundation. As …

READ MORE →
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 CysticFibrosis.com in hopes of sharing his experience as a spouse of someone who lived with CF. Jesse and Ashley’s Story …

READ MORE →
Advocacyfeatured_memberSupport

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 …

READ MORE →
Living With CFSupport

A Brain, A Heart, Courage: the e-Patient community for Cystic Fibrosis

Back in 2010, Jeanne Barnett wrote about the e-patient, using the metaphor of the Wizard of Oz: it is still relevant today with patients in our cystic fibrosis community being very astute at learning, empathetic toward each other and courageous going forward with many new drugs for personalized medicine. Thanks to PharmaPhorum …

READ MORE →