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?

Renovion’s ARINA-1 Shows Promise in CF Mucus Clearance, Study Finds

Jul 21, 2020 07:01 am | Cystic Fibrosis News Moderator

Replies: 0
A study in cells of CF patients with F508del mutation found ARINA-1 may be better than current options for clearing mucus, especially in combo with Orkambi. Learn more here.
What do you think of this news?

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

Jul 20, 2020 05:56 am | Bailey Vincent

Replies: 0
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?

Learning to step away

Jul 19, 2020 02:18 am | Jenny Livingston

Replies: 1
As a person with chronic illness, the internet is a place I can turn for support, information, and community. As someone with CF in particular, the internet is a place to form and maintain friendships that are not safe for me to have in “real life.” (We’ve been social distancing since long before it was the cool thing to do.)
But I’m currently in a fight with the internet, or more specifically, a huge percentage of the people who exist there. Politics, coronavirus, and The Great Mask Debate have brought to light many perspectives I genuinely didn’t know existed. Even friends and family members have shown colors that, quite frankly, are horrifying to me. I’ve been hurt, upset, deeply saddened, and enraged by so much of what I’ve seen. The discourse taking place is far from productive.
How do you know when to step away? The online CF community brings so much joy and fulfillment, yet the negativity and constant debate about the value of human lives is draining. My mental health is suffering.
How are you balancing the need for connection with the need to protect your mental health? When do you know it’s time to step away? Can we maintain the good and productive relationships while silencing the negativity online?

Joking About Health: When Is It “Too Far”?

Jul 17, 2020 10:36 am | Bailey Vincent

Replies: 0
Forgive me for posting about the coronavirus when so many are wanting an escape but… well, this week it has been hard to escape in my personal life. Other than the fact that friends have been stricken and it’s basically a conversational point everywhere, I was really upset to see a young man essentially “mocking” mask-wearing in a store the other day.
I vocalized my frustrations in a vent-on-video I posted on my personal Instagram, but I was so concerned with how one can trivialize something so serious for so many?
Maybe I’m being sensitive (I definitely can be), but I wondered: Has anyone ever made “light” of your Cystic Fibrosis or illness in your life? Did you discuss it with them or let it slide?
I normally am a HUGE fan of joking about symptoms or being silly with doctors and staff, but when does the line between “making light” and “reckless and cruel” get crossed?

Spinal Tap Time: Preparations and Predictions

Jul 17, 2020 06:11 am | Bailey Vincent

Replies: 1
Yesterday I had a lumbar puncture procedure to test what’s been going on with my spine, and it means I have to do moderate bed rest for the first 24 – 48 hours or so.
The last time I had this type of test, I ended up getting a spinal fluid leak really quickly. It didn’t go away until I was hospitalized and patched up with a “blood patch.” This is my third lumbar related puncture in 2020, and I’m starting to feel like an actor from This Is Spinal Tap.
I am often lax about not wanting to “over think” procedures. I follow rules, but don’t want to make something feel larger than it is. If a doctor warns about the “down sides”, I always think positively (“That won’t happen to me”), and go on with my day
But sometimes the lassez-faire approach can backfire, and you end up with complications despite your best intentions!
QUESTION:
What is one time when the “worst case” medical scenario actually happened to you?
How did you handle it, and did it make you more scared or cautious the next time?

Orkambi Benefits CF Patients Across Levels of Lung Health, Study Finds

Jul 17, 2020 05:00 am | Cystic Fibrosis News Moderator

Replies: 0
163A real-world study of Orkambi’s use by 827 patients, including those kept from trials, supported its broad label based on lung function and weight gains. Click here to learn more.
What do you think of this news?