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?

Person-first language: what are your thoughts?

Aug 06, 2020 08:25 am | Jenny Livingston

Replies: 0
Within the disabled and chronic illness communities there is a push for the use of person-first language. For instance, rather than referring to someone as disabled, they would be called a person with a disability. In the context of CF, this means nixing phrases like “CFer” and instead, focusing on people for who they are rather than what they have (ie: a person living with CF). Person-first language is generally considered to be the most respectful way to talk about people with disabilities or differences, but I wonder…. how do you feel about it?
Do you want to be called a patient/CFer, or do you prefer the term person with CF?
How important do you think person-first language is?
What terms do you use when referring to yourself? CFer, cyster/fibro, adult with CF, other?
If you are the parent to a child with CF, how do you want others to refer to them?
What are your thoughts on person-first language?

Scar Positive Feelings: What Would You Change?

Aug 06, 2020 08:08 am | Bailey Vincent

Replies: 1
If you could erase your scars through surgery… would you?
I wrote about the idea of #scarpositivity in my column this week, but was worried it came off as single-minded. Even though I said sentences akin to “everyone should feel good in their bodies”, I still expressed my decision to embrace my scars as much as possible.
Still, this isn’t right for everyone. I honestly hated my belly button for as long as I can remember. My friends used to tease me about my “belly button” obsession. I loved it when I had a piercing, but (after it became infected from a G tube placement), I was unhappy with it taken out.
This seems SO silly, right? I don’t personally want to go through elective surgeries when mandatory ones lurk everywhere, but I probably would have changed it if I could back then. In the end, it was changed accidentally during a stomach surgery, and I liked the remodel enough to stop harping on such a small detail.
We are our own worst critics and the pressure (especially on women) sometimes feels inescapable.
Do you think we need more #scarpositive conversations online?

Let’s talk about mucus (a mini Trikafta update)

Aug 06, 2020 08:01 am | Jenny Livingston

Replies: 6
Let’s talk about mucus! In what other community can you begin a discussion with those words? Hah!
I’ve posted a few updates since I started Trikafta in November, but rather than repeating all those things here, let me just say — I’ve seen some incredible improvements! The other day, I was talking with a clinical research coordinator about the potential to participate in a study that requires sputum samples. Here’s the thing: I haven’t been able to produce sputum since March. Not even a little bit here and there. Just… NONE. It’s the most bizarre thing!
Have you noticed changes in your sputum since Trikafta? Are you producing less or has the consistency changed? Have your cultures come back with different or less bacteria growth?

Resiliency and other qualities

Aug 05, 2020 11:50 am | Jenny Livingston

Replies: 0
A friend recently told me, “You’re one of the most resilient people I know.” Honestly, I take that as a huge compliment! My resiliency is something I’m proud of, and I believe CF is what has instilled the most strength, drive, and hardiness within me.
I’ve heard people say, “I wouldn’t be who I am today without CF.” While this might sound a bit cliché to some, I completely agree with the sentiment!
Are there parts of your personality that CF has instilled or magnified within you? Has CF helped you develop qualities that you are proud of? Are there specific lessons you’ve learned from CF that have strengthened you?