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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?

“Normal people sick” and other code words/phrases

Feb 24, 2020 10:40 am | Jenny Livingston

Replies: 1
Today I woke up with a nasty head cold, and in an effort to distinguish today’s symptoms from the ones I normally have, I’ve found myself saying that I’m “normal people sick.”
Everyone I’ve spoken with today has totally understood what that means for me. But if I were to say that to someone outside my CF/chronic illness community, I’m not sure they’d understand. And that got me thinking…. are there certain words or phrases we use, kind of like a code, to describe how we’re feeling without having to go into detail?
“Normal people sick” for me, means that I’m dealing with a virus or other acute illness on top of CF.
“CF sick” means that I’m experiencing an exacerbation. “CF sick” usually leads to a hospital stay.
“I’m hanging in there” is usually accompanied by a forced smile and means that, while I’m probably feeling pretty terribly, life must go on. It might be by a tiny thread, but I am indeed hanging in there.
“Brain fog.” This one is hard to describe to anyone who hasn’t experienced it. But if you’re like me, you read those words and can almost start to feel the fog rolling in.
“I’m going to bed” rarely means that I’ll actually be sleeping.
Similarly, in our house “resting” is synonymous with ” “I won’t be sleeping, but my body needs a break.”
Do you use any words or phrases that have a deeper meaning? Do people outside your circle know what these things mean, or is it a code that only a few understand?

Antibiotic Combo Kills M. Abscessus Bacteria, Common in CF, Study Says

Feb 21, 2020 04:04 am | Cystic Fibrosis News Moderator

Replies: 0
Amoxicillin, imipenem, and relebactam together killed M. abscessus, a bacterial infection dangerous to people with cystic fibrosis, a study has found. Read the story here.
What do you think of this news?

So This Is How My Life Is Now

Feb 20, 2020 10:59 pm | Cystic Fibrosis News Moderator

Replies: 1
Tré LaRosa says that, despite a possible exacerbation recently, he remains upbeat about overall improvements in his health. Read more from Tré here.
How do you stay upbeat and positive in the face of difficult circumstances?