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 Advice Needed: Preparing For Surgery Feb 19, 2020 11:02 pm | Bailey Vincent Replies: 2 I’d like to think I’m a bit of a pro when it comes to surgeries, though I’d rather not be. There are a few things I always try to do beforehand to prepare, like straighten my naturally curly hair (to make it easier to deal with in the days thereafter) or pack comfy clothes and blankets. But, while preparing for my next operation (just sinuses!), I’d love to know: What do YOU do to prep for surgeries or procedures? Read More Sterlizing nebs Feb 19, 2020 07:19 am | Jenny Livingston Replies: 0 I’m curious…. How do you sterilize your nebs? (Boiling, baby bottle sterilizer, dishwasher, other?) How often do you clean them? (At the end of the day, after each treatment, or other?) How do you sterilize them when traveling?  I’ve tried different methods, but always come back to good ol’ fashioned boiling. And I don’t travel often, but when I do, I prefer to use disposable nebs. There’s been a time or two that I’ve microwaved them (distilled water, steam bags) while traveling, but it’s definitely not my favorite. I’m curious about your neb cleaning routines! And if you have any unique tips for sterilizing while traveling, I’d love to hear them! Read More CF From the Global Perspective: Do You Think Outside Your Country? Feb 19, 2020 06:57 am | Bailey Vincent Replies: 1 I wrote a column this week about my own reaction to the (relatively racist) reactions to a “foreign film” winning The Oscars last week, and my own reflections as a Deaf woman in terms of language and interpreter shaming. Although it seems like a leap (it was, but trust me it all connects), I often find this same sort of nationalist-narcissistic thinking when it comes to CF advocacy, as well. I am the worst at this. For example, I will write about the amazing benefits of new medications and how excited I am for my friends’ improvements and progress, without ever thinking about those diagnosed in third-world countries without any sort of CF registry, or clinics, or otherwise. Sometimes we talk about breakthroughs and cures from such a first-world (and, in my case, Americanized) perspective, that we forget this is a GLOBAL disease that impacts so many more than those outside of our own bubble. In this sense, or educational and advocacy jobs are truly never done… not until the entire world receives proper treatment and support. Question: How often do you think about those with CF with different circumstances than your own? Read More Proteostasis On Track to Collect Organoids for CF Personalized Medicine Strategy Feb 19, 2020 04:01 am | Cystic Fibrosis News Moderator Replies: 0 Proteostasis Therapeutics is on track to collect tissue samples from 500 people with CF by April for its project aimed at creating personalized medicines. Click here to read more about this exciting project! What do you think of this initiative? Read More Recent Posts What makes YOU rare? Check out these stories! How Do You Deal With Loved Ones Getting Sick? Keeping track of it all… I Struggle with Feeling Like an Outsider in the CF Community Does Sickness Make Finding a Valentine Harder?