Topics in the CF News Today Forum That You Might Have Missed

Cystic Fibrosis News Today Weekly Forum Digest Join the discussion! See below for the latest topics and conversations about CF taking place in our forums. Your voice is needed! New to our forums? Register here.   CF Patients Improve Lung Function with Elexacaftor Combo, Data Show Jan 02, 2030 04:44 am | Cystic Fibrosis News Moderator Replies: 0 Adding elexacaftor to tezacaftor and ivacaftor leads to marked improvements in lung function and quality of life in people with cystic fibrosis, data show. Read more about it here. What do you think of this news? Read More Telemedicine One ‘Good’ Thing to Come Out of COVID Crisis, Doctors Say May 05, 2020 04:40 am | Cystic Fibrosis News Moderator Replies: 0 With stay-at-home orders in place due to the COVID-19 pandemic, the use of telemedicine to conduct doctor’s appointments and checkups is on the rise. Learn more here. Have you ever tried telemedicine? Do you think it is a good alternative to face-to-face appointments? Read More The thing I don’t REALLY want to talk about, but feel like I should… May 04, 2020 04:28 am | Jenny Livingston Replies: 6 There’s something on most of our minds right now that I’m torn between wanting to discuss and wanting to hide from. COVID-19/Coronavirus. If you’ve been following along, you know that there are confirmed cases (including a couple fatalities) here in the United States. What does this mean for both our CF community and society as a whole? I’m admittedly not sure, but here are a few sources that I have found helpful: “https://www.pharmaceutical-technology.com/special-focus/covid-19/coronavirus-covid-19-outbreak-latest-information-news-and-updates/ Apple Podcast: https://podcasts.apple.com/us/podcast/this-podcast-will-kill-you/id1299915173?i=1000464558660&fbclid=IwAR04pO3s3anyaZwLeZ_eq29RuA6z62n1H9wNtQm9r8YzrJiEGjGzSm8lXS4 Gunnar Esiason blog: http://www.gunnaresiason.com/coronavirus-covid-19-and-some-of-the-ethical-questions-facing-the-cystic-fibrosis-community/ New York Times article: https://www.nytimes.com/article/what-is-coronavirus.html? CDC Article: https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html I think it’s important to gather as much information as possible, while being careful to avoid sensationalized news and fear-mongering. Also, if you have specific questions or concerns, call your CF clinic. This is definitely on their minds as well! What are your thoughts on COVID-19? Are you doing anything differently to prepare for a potential outbreak in your area? Do you think the fear surrounding COVID-19 is warranted? How can we support one another during this time? I’d love to have a calm, well-informed chat about this! This topic was modified 2 months ago by Jenny Livingston. This topic was modified 2 months ago by Jenny Livingston. This topic was modified 2 months ago by Jenny Livingston. This topic was modified 2 months ago by Jenny Livingston. This topic was modified 1 month, 2 weeks ago by Marta Ribeiro. This topic was modified 1 month, 2 weeks ago by Marta Ribeiro. This topic was modified 1 month, 2 weeks ago by Marta Ribeiro. Read More Book Recommendation: Disability Essay Anthology May 04, 2020 02:00 am | Kevin Schaefer Replies: 0 Hey everyone! Hope you all had a safe and relaxing weekend. I wanted to share this book with you all. This is a collection of essays from the New York Times disability series. The book’s contributors include people living with quadriplegia, chronic illnesses, blindness, and more. The idea is to give people with a plethora of visible and invisible disabilities a platform to share their stories. You can also find the archives from this series here. I’ve read a number of these essays before, and they’re fascinating. Topics range from disability rights to navigating the world of online dating with a disability. Here’s an excerpt from the synopsis on Amazon: “Reflecting on the fraught conversations around disability―from the friend who says “I don’t think of you as disabled,” to the father who scolds his child with attention differences, “Stop it stop it stop it what is wrong with you?”―the stories here reveal the range of responses, and the variety of consequences, to being labeled as “disabled” by the broader public.” I’d love to hear if any of you have read this book, or any of the essays from it. It’s great to see this kind of media representation. Has anyone here read this book? Do you have any favorite essays from it? Read More Recent Posts S. aureus in CF Airways Change With Antibiotic Use, Age, Study Finds Columnist Writes About Slowing Down New Capsules Being Readied for Trial of Digestive Enzyme for CF with EPI Online Therapy Report Cites IDPN as Nutritional Tool in CF Patients with Kidney Disease