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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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The Data Will See You Now! and Cystic Fibrosis Data is Valuable!

I was invited to speak at the PanagoraPharma Conference on Mobile Technology on June 28, 2017. I arrived first thing on Tuesday morning, slide set in hand. The 40th floor of Trade Tower 7 New York City is just as amazing as it sounds…but as I walked in, I was …

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AbbVie scholarship for students with cystic fibrosis

Thanks to 25-years of medical advancement, the goal of pursuing higher education for many students with cystic fibrosis, an inherited chronic disease that affects the lungs and digestive system, is more achievable than ever before. AbbVie announced the opening of the application period for the AbbVie CF Scholarship program, marking …

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New on our Cystic Fibrosis Social Media (@knowcf)

We are active on social media – want to know the latest news? Please follow the links to see what is new on our Cystic Fibrosis Social Media channels. Post your own comment – or just see what others are saying. January 2017 Facebook: Facebook.com/KnowCF Facebook Member Post: A member of our …

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