Cystic Fibrosis News Today Weekly Forum Digest

Join the discussion! See below for the latest topics and conversations about CF taking place in our forums. Your voice is needed!

New to our forums? Register here.

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?

Back to school, or not?

Jul 23, 2020 05:55 am | Jenny Livingston

Replies: 0
Piggybacking on Bailey’s recent post about attitudes toward schooling, I wanted to dive into more of the logistical side of things. As I weigh the pros and cons of sending my daughter back to school this fall, I’m really struggling. This is NOT an easy decision to make!
The situation isn’t helped by the fact that our school district hasn’t yet released their plans. We have a statewide school mask mandate, but there has been intense pushback from parents. There are many people in my little community who don’t want their children to wear masks or practice distancing measures in school. Even if the best of preventative measures were implemented (which I am NOT confident they will be) I am not certain I’d send my daughter back. At this point, there is still so much to consider.
What are your thoughts? Does your school district have a preliminary plan? Are you going to choose homeschool or an online option instead of in-person learning? What are the pros and cons for your family?

How have you stayed busy during quarantine?

Jul 23, 2020 05:39 am | Jenny Livingston

Replies: 2

It goes without saying that many of our lives have drastically changed since this pandemic began. I don’t want to dismiss the very real struggles many people are facing during this time, but at this particular moment I want to focus on something a bit less heavy.
Since spending so much more time at home, I’ve had some extra time to rediscover some of my talents and hobbies. I began painting again, learned how to make jewelry, returned to journaling and meditation, and more. About a month into our quarantine experience, we did something impulsive and maybe a little reckless… WE GOT A PUPPY! In the months since then, several other families I know got a puppy as well. It makes total sense to me! What better time to potty train a puppy than when you’re stuck at home anyway? Those puppy snuggles are also a great way to relieve stress (in my opinion anyway).
I’m curious, how have you stayed busy during quarantine?
Have you learned a new skill? Did you join the Pandemic Puppy crew? Did you rediscover an old hobby or dust off some forgotten talents? I’d love to hear how you’ve been spending your time recently.

Is Chronic Pain a Symptom of CF?

Jul 22, 2020 04:08 pm | Bailey Vincent

Replies: 1
My column yesterday talked about chronic pain and how I’ve often misidentified with this label. “I don’t have chronic pain,” I think, “I have a variant of Cystic Fibrosis”… They’re different, right? To me, chronic pain almost felt like a problem in of itself, versus a consequence of living in a body that doesn’t always behave.
But here’s what I wonder: How many of us have chronic pain and where?
I’m curious how many of us feel pain in the same places.

Do you wish that “chronic pain” would be treated and cared for as a symptom of CF?

Unpopular Opinion: Do You Love or Hate the “I” Word?

Jul 21, 2020 03:30 pm | Bailey Vincent

Replies: 1
Inspirational.
This is a word that is used a lot in the chronic illness community. Some people hate it and don’t want to be “inspo porn” (for lack of a better term) for others, while some find the encouragement kind and well intended.
I’ll admit that I’m a bit of both, and truly see both sides of the fence. I wrote about being called “brave” on my Instagram yesterday, and how I feel like I crave the approval of this word from those closest to ne (I truly want my doctors to be like: “Wow. You are so tough”), but also see how placating – and even ableist- it can feel for anyone born with a unique body. Basically… I’m a really confused hypocrite at all times.
What do YOU think? How does the I word make you feel, and what do you wish others would say instead?