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?

Vacations: Good, Bad, Ugly

Sep 01, 2020 05:59 am | Bailey Vincent

Replies: 0
We had to cancel our singular vacation of the year last week (we would be there now if all had gone to plan) because of Covid-19 and virus precautions. Originally, we were going to travel a couple states away and stay at a bargain deal of a spot along the beach (thanks to a friend’s discount). But since numbers were rising- especially in that area- and we didn’t want to travel that far just to hide… We got a refund and cut our losses.
Thankfully, we had a “Hideaway Getaway” over the weekend with two of our closest friends (who’ve both been socially isolated). We were in a really remote area with less cases than where we live now, and mostly stayed indoors at the house or in the great outdoors.
Still, it’s always disappointing when we have to cancel special occasions or shift plans.

What is one of your most memorable vacations in your lifetime so far, and how did CF impact the experience? Would you do it all again if you could?

How “Healthist” Are We?

Sep 01, 2020 12:51 am | Bailey Vincent

Replies: 4
My column this week is about something that might seem a little bogus: Being healthist.
I first read about it in a lovely article on Self.com called “We Have To Stop Thinking of Being Healthy as Being Morally Superior“, even though the term was coined in 1980 by Robert Crawford.
In short, it’s basically another form of “ism” in terms of judging someone else for something they can’t control or were born into. Just like sexism, ageism, racism and beyond: healthism is a way to separate yourself from another, and cast assumptions or accusations about something you might not fully understand.
I am VERY guilty of this in the past, sadly… and I have no doubt we all are at one point or another.
Often, healthism is seen when strangers comment on someone’s healthy habits online (sometimes a form of sizeism too), or whenever we assume another has equal access to the same healthcare and healthy living options we do. For myself, the latter hits hardest. Any time another person assumes I have access to certain foods, medications or supplies, without knowing my full story, it makes me feel defensive because… well, if I could live in #healthylifestyle world all the time I would! I try, but I am not always perfect.
Have you ever faced healthism before?
Meaning, have you ever felt like your economic, social or physical status in life has caused unfair blame from someone else, perhaps because they believe you should be “healthy” in a different way?
I feel like this hits CF patients in different ways from different sources, so I’d love to know your experiences if willing to share!

Birthday thoughts

Aug 31, 2020 03:17 pm | Jenny Livingston

Replies: 3
Not to toot my own horn, but today is 33rd my birthday!

There was a time that birthdays didn’t mean that much to me. It would have been easy for me to let them slide by unacknowledged. But as I’ve gotten older, I’ve come to appreciate them so much more. In fact, I’m now a firm believer that we should celebrate the beauty of life anytime there is reason to. Birthdays? Celebrate! Anniversaries? Celebrate! Milestones and accomplishments? Celebrate! A random Tuesday? Celebrate! I think you see my point.
I now treasure birthdays and refuse to let one pass without acknowledging what a gift it is to be alive. “Growing older is a privilege denied to many” and I am so grateful I’ve been granted that privilege so far.
How do you feel about birthdays? Do you like to celebrate them or let them pass quietly? Just for fun, what is a favorite birthday related memory you have?

What I Eat In a Day…. Join Me?

Aug 28, 2020 12:18 pm | Bailey Vincent

Replies: 3
I talked about nutritional philosophies yesterday on the forum and today, I wanted to ask “What Do You Eat in a Day”? This is one of my all time favorite questions, and I giddily watch What Eat In a Day videos online whenever I get the chance (cliche-girl as that may be). I love observing the daily routines and health habits of others, and I’m even MORE curious when it comes to friends or carers of those with CF.
For caretakers, does your position as health advocate influence your nutrition? As patients, do you avoid certain items or load up on others? For those on Trikafta currently, has this changed how you eat?
I became a vegetarian at a young age, and try to limit my protein to veggie or pescatarian whenever possible… but I genuinely feel better (digestively) when I eat chicken and eggs. (Ew. I feel gross even typing it because I’m that grossed out by meat. I hate cooking it, touching it, and so on.) I don’t judge anyone else for how they eat (my partner is a definite carnivore) but I know that what feels good for me physically doesn’t always align with what feels good for me mentally and instinctively… and that can be baffling.
What have you eaten today, and does it reflect a typical day of eating?