Cystic Fibrosis News Today Weekly Forum Digest

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Traveling with CF

Apr 15, 2019 05:22 pm | Tré LaRosa

Replies: 0
Traveling with CF can be very difficult – lugging the vest, compressors, medications, and more is cumbersome and stressful.

What are some of the most frustrating aspects of traveling with CF for you?
What are some strategies you’ve found to help alleviate those annoying concerns?

Adjusting after a long weekend

Apr 15, 2019 05:21 pm | Tré LaRosa

Replies: 0
I went to DC for the weekend and I am beyond exhausted. It’s hard to get readjusted for me.

What are some steps you take to readjust?
What qualifies as a long weekend for you?

Choline Supplementation Improves Lung Function in People with CF

Apr 15, 2019 04:52 am | Cystic Fibrosis News Moderator

Replies: 0
Click here to read about choline supplementation and how it may work as a potential treatment strategy to improve lung function and liver health in people with cystic fibrosis.
Have you tried or considered choline supplementation?

My “Miracle” CF Medication Isn’t Living Up to the Hype

Apr 15, 2019 04:51 am | Cystic Fibrosis News Moderator

Replies: 0
Elizabeth Rogers had a lot of hope for the CF modulators Orkambi and Symdeko, which had the internet abuzz. Unfortunately, they simply didn’t work for her. Read more about Elizabeth’s experience with these “miracle” drugs here.
Have you ever tried Orkambi and/or Symdeko? If so, did it work for you? What other drugs have you tried that didn’t live up to their hype?

Careers and Impact of CF

Apr 15, 2019 03:32 am | Luisa Palazola

Replies: 0

Does Having CF Affect a Career Negatively or Positively?

CF News Today reached out to our community on Facebook and asked about job situations for people with CF, and columnist Elly Aylwin-Foster reflected of the vast array of answers we received. But, asks the question, what would I be like without having CF?
For me personally, I don’t know where I’d be. CF defines and influences so many of my career goals, and more importantly, my passions. Perhaps if CF were to magically vanish, and I could continue life (without the lung damage) I think I’d certainly go back to school and pursue a Master’s and pHD, with a little more ease.

Harsh Realities

Apr 12, 2019 12:25 pm | Luisa Palazola

Replies: 0
I was sifting through my emails and somehow ended up in May 2010, and I immediately saw an email from the old site CF networking, CysticLife. I saw I had gotten a notification from an old friend with CF through there, and then I realized I hadn’t heard from her in, well, years.
I sifted through Facebook to see if I could find her, but was unsuccessful. With friends without CF or normies (able bodied people), you kinda accept you lost touch with them. But, with old CF friends, there’s the real and tangible reality, that they may have passed away. Perhaps she is doing well and thriving, I hope so. But, I don’t know.
It’s strange coming to that realization, and it makes me feel weird about my own reality and my own future. Have you come across this feeling?

Modulating Reality

Apr 12, 2019 12:13 pm | Luisa Palazola

Replies: 0
CFTR modulators are a huge hype for the CF community, but sometimes people don’t feel or see the vast change in health that they expect. This has been the reality \for patient columnist, Elizabeth Rogers, which felt isolating. Have you had high expectations for modulators and found a different reality? Click here for the full column.