Thank you, Paul for your contributions here. Everyone is different and there are those who I’m sure, suffered through many similar side effects that you did.

We want to hear about the best things to happen to YOU this past month!

For me, this month marks my third year at my full-time job helping seniors, veterans, and fellow disabled citizens!

What was a monthly win for you? How would you like to build off that going into April?

It’s March, which means those of us in the Northern Hemisphere are experiencing springtime allergy season! For those in the southern hemisphere, the autumnal allergies have arrived.

What do you do to combat allergies during this time of the year? What tips do you have to help people who may feel like nothing works for them?

Hi, Paul! I hope you’re doing well! Whenever you are ready to open up about your experiences with Trikafta, we are here to support you.

In one of Tré LaRosa’s recent columns, he explores his relationship with his fiancée. Specifically, he writes about how CF is part of their relationship and the conversations that he and his partner have had about his disease.

As a married man with CF, I knew being upfront about CF and my experience with it was important to tell my wife on… Read more

We want to hear about the best things to happen to YOU this past month!

For me, this month marks my fifth year of marriage to my lovely wife.

What was a monthly win for you? How would you like to build off that going into March?

In a recent guest column, writer Daelyn James talked about how they prefer to keep CF private because of the judgment that follows sometimes when people know.

We’ve all been there: evaluating a social situation and knowing it’s better to keep CF private than talk about it.

Do you prefer to keep your battle with CF private? Why or why not?

A few months ago, I went to a local radiology center to get a bone density test done at the recommendation of my doctor. My results stated that I have osteopenia.

Bone density tests are not just the best measure for how your bones are developing as we get older, but are also important in dealing with CF-related diabetes. People with… Read more

Once a childhood disease, most people with CF today are adults! Because most of us are adults, we’re all looking for help with getting older, especially from older people with CF.

I’ve definitely sought advice from people older than me with CF, and the most recommended form of advice given to me is to understand the importance of… Read more

In a tradition we’re looking to bring back, we want to hear about the best things to happen to YOU this past month!

For me, this month marked the one year anniversary of my taking Alyftrek! The medicine has radically changed my life and given me a new hope and a new opportunity.

What was a monthly win for you? How would you like to build… Read more

The importance of clinical research and testing cannot be understated for the CF community. In his new column, Tre LaRosa wrote about his experience partaking in a clinical trial that ultimately did not lead to a new medicine.

However, LaRosa feels that the clinical trial was important.

Have you partaken in a clinical trial for CF? If… Read more

Partnerships in CF are the best way to tackle CF!

What would you say has been the most beneficial food item in this protein-rich diet?

That’s awesome! Hopefully, you can travel to a new location this summer that’s been on your bucket list.

What’s your favorite beach that you’ve ever been to?

Yes! Hopefully, some of the drugs in the pipeline that are undergoing testing will be approved. Therefore, more people will have more opportunities to live a full life with CF modulators.

I’m not sure about Trikafta, but Alyftrek has helped improve my liver numbers a bit! I’ve mostly purged a lot of mucus every few days. Keep in mind, though, everyone is different!

Awesome! Hope some great tunes are coming your way!

Every body’s body reacts different and I’m glad Trikafta works for you!

It’s definitely the medication. I know I had some of those symptoms initially after starting it. They’ll eventually phase out and you’ll be okay.

Thanks, Lin! If you’re in the US try reaching out to your state college’s hospital. They generally have CF departments.

With Christmas just a few days away, and many other holidays at this time, it can be a busy time of the year. It can be especially challenging to balance our health with holiday festivities, traveling, etc.

What are your plans for the holidays? If you are a CF patient or caregiver, do you have any tips for managing your health needs during… Read more

We’re just weeks away from a new year! In 2025, we saw the introduction of Alyftrek and saw more trials of CFTRs developed for folks who have 10% of nonsense genes.

What are you looking forward to in 2026? Are there any trials you’re following for yourself or loved ones?

Let’s go with something fun and light! Almost everyone listens to music, and music, I find, helps me get through treatments and pass the time.

What music have you enjoyed this year? I’ve enjoyed new albums from the band Turnstile and rap duo Clipse. I’ve also been listening to Bruce Springsteen’s 1982 Nebraska album a lot.

Absolutely! That’s what we’re here to do.

It will stand for cure found one day!

Are there any activities you enjoy doing outside?

Definitely! And great doctor appointments never hurt, either.

I can imagine! Did parents ever give you any pushback?

Do you use a nasal spray in addition to these helpful devices?

We’re in the midst of fall/autumn here in North America! In the Northeast of the United States, we tend to get chilly and windy autumns. For me, I know the wind can take my breath away and affect my asthma.

How does fall/autumn affect your lungs? If you struggle, what do you do to alleviate your issues?

Wow! I’m sorry to hear about your sister. While that’s tragic, I’m glad to hear that you’ve been able to live a long life.

Wow, Kristina! All of that testing, but never retesting for CF is astounding. For quite a long time, medical officials really stuck to a strict textbook definition of CF. Reasonably so, because it was very binary back in the day. Thankfully, you have a proper diagnosis!

I’m an adult with CF, which means that at one point, I was a teenager with CF. Being a teenager now, with CF, is a huge difference from 20 years ago when I was a teenager. Back then, the average life expectancy for CF was 33, and there were no modulators!

If you’re a parent of a teen with CF, is there any advice or help you’re looking… Read more

Hi all! My name is Will, an adult with CF, and I’m a forum moderator here. I just wanted to welcome everyone to our new subforum for adults who were diagnosed later in life, whether as teens or adults.

If you are here, please feel free to introduce yourself and tell us about your diagnosis story. What questions do you have? Are there any… Read more