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?

Calming Thoughts During the COVID-19 Pandemic

Mar 30, 2020 02:00 am | Kevin Schaefer

Replies: 0
Hey everyone! Hope you’re all staying safe out there.
My name is Kevin Schaefer, and I’m the Forums Director for this site’s parent company. I don’t have CF, but I have another rare disease called spinal muscular atrophy (SMA). You can read about my life and experiences in my column here.
As someone who is also a high-risk patient, I have a lot of concerns for my health during this crisis as well. However, I found this column from my friend and colleague Brad Dell to be really encouraging and comforting. As people with rare diseases, we’re more or less veterans to situations like this.
Writing about how the people who survive this virus might be affected, Brad writes, “I hope they recall the loneliness of isolation when they meet someone who is no stranger to it due to a faulty immune system. I do not want society to experience this harshness in order to avenge me or so that they can pity people like me. But now that they’re in this situation, I hope they leave the pandemic with empathy. This, friends, is the life of the immunocompromised.”
This passage sticks out to me in particular. Though I hate that we’re all in this situation right now, I do hope that humanity can come out of it more empathetic than ever before. Maybe that’s just the optimist in me, but we all need to cling to hope right now.
Do you have any takeaways from this column? How are you coping during this time?

What Does Compliance Mean During the Coronavirus

Mar 27, 2020 09:52 am | Bailey Vincent

Replies: 2

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?

CF Foundation Awards Armata Up to $5M to Advance AP-PA02 to Trial

Mar 27, 2020 04:46 am | Cystic Fibrosis News Moderator

Replies: 0

The Cystic Fibrosis Foundation has awarded up to $5 million to Armata Pharmaceuticals to advance the development AP-PA02 to a Phase 1b/2 clinical trial. Read more about it here.
What are your thoughts about this news?

Quarantine Routine: What’s Yours?

Mar 27, 2020 04:29 am | Bailey Vincent

Replies: 1

I am already trying to think about topics for my column next week, and I keep coming back to the notion of a Quarantine Routine and how much I need one for myself. I’ve seen others posting about what they’re doing while social distancing or stuck at home, whether that be daily workouts, or cooking, or crafting projects… And I was wondering: What is your Quarantine Health Routine right now?
Are there any goals you’re trying to meet or health realities to face? For example, are you trying to gain weight during this period of time, or do a certain number of treatments per day?
I haven’t yet formulated my own goals (still feeling a little apathetic right now), but I’d love to know yours and get inspired!