Cystic Fibrosis News Today Weekly Forum Digest

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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?

Do You Have CF AND Another Disease?

Mar 18, 2020 01:33 pm | Bailey Vincent

Replies: 0
I wrote a column this week called “I Don’t Fit the Description of What CF Is Supposed to Be” and I’m wondering: How many of you have some other illness that doesn’t commonly connect to CF?
I have friends who have CF and fibromyalgia. Or CF and something else. Does anyone else have “CF And”?
I personally consider all of my complications and “somethings” as connected to CF or CFTRD in some way… and they are. But I’m curious how many friends out there have CF and some other comorbidity or complication that is surprising or unusual?
I’d love to learn!

Schooling from home

Mar 18, 2020 12:10 pm | Jenny Livingston

Replies: 0
Here in the United States, we’re seeing massive school closures across the country due to COVID-19. Colleges and universities have moved to online instruction, and most K-12 schools have been closed for the time being.
My daughter’s school, for now, is doing distance learning. Her teacher records “welcome” videos each morning and talks about the assignments for that day. My daughter is then able to complete and turn them in online. This has made the transition to homeschooling parent incredibly easy for me! I also appreciate the fact she is home with me and safe from potential exposure at school. (I had actually pulled her out of school before we learned it would be closing.)
Have you suddenly found yourself schooling at home as well? Does your child’s school (or your school, if you’re attending college) have curriculum posted, or are you coming up with learning content yourself? Are you enjoying this break from traditional schooling, or are you realizing all the reasons you never became a schoolteacher in the first place?

What Does Compliance Mean During the Coronavirus

Mar 18, 2020 10:11 am | Bailey Vincent

Replies: 1
I have read the advice about cancelling all non-urgent medical appointments amid the COVID-19 outbreak but I can’t help but wonder: What does compliance mean during the coronavirus?
I have an important appointment tomorrow that is not medically urgent (I’m not in pain at this moment) but it IS in the sense that it’s dealing with something that can become urgent/cause me pain historically and it was made about 6 months in advance. I’ve been waiting for this appointment for awhile, but also assume it might get cancelled like so many other things have been recently.
Is avoiding hospitals the most compliant move right now, or is going like you planned? How are YOU personally handling these sort of decisions?