In a recent column by Jennifer Cogliano, Jennifer writes about her experiences bonding with fellow parents of children who went to school with her daughter and the bonds they formed. These friendships developed into what she calls a “village” of people who care and look out for one another.

As someone living with cystic fibrosis, I’ve… Read more

Outside of the movie Five Feet Apart, which I still haven’t seen, I’ve seen it depicted a few times on Grey’s Anatomy, earlier in the show’s run. I would say it’s been depicted accurately. Granted, Grey’s has a flair for the dramatics, but I do not recall it being too over the top. Then again, there’s over 20 (I believe 22 or 23 seasons) of…

Read more

Recently, the FDA approved the eligibility of Alyftrek and Trikafta for more CF patients. The inclusion allows many more CF patients to take these modulators than previously.

Obviously, this is a big deal for our community, and I would love to hear your thoughts!

What is your experience with CF treatments? Were you recently approved for… Read more

Hello, CF community!

I enjoyed this column by Anna Jeter. This is from Pulmonary Hypertension News, one of our sibling sites. Anna writes about many of the frustrations she’s had with medical dramas in the past, and how they are often woefully inaccurate. As a patient with pulmonary hypertension, she stopped watching these shows for a long… Read more

Columnist Tré LaRosa recently wrote about advocacy and cystic fibrosis. He went with his parents to Capitol Hill to meet with representatives and advocate for the CF community. Check out his column here!

I really like how this piece emphasizes that advocacy takes many different forms. I especially like this passage: “To me, advocacy is… Read more

I am sorry the link does not seem to work correctly on this website.

Go to our website

https://www.parkinsjordaans.nl/paul_debbie.php

 

and click on the story nr. 47.

or contact me on

paulmetdebbie@gmail.com

then I will send the file to you completely for free.

 

Cheers, Paul

Congrats William to your 3rd annual anniversary!

In March 2026 the best thing that happened to me (so far) is that I finally overcame the terrible mental side-effects of Trikafta (Kaftrio is the European name) from which I suffered deeply since starting the drug in 2021.

I had a manic period (about 10 months) followed by a severe… Read more

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?

You can find it here

https://cysticfibrosisnewstoday.com/forums/forums/topic/trikafta-kaftrio-4-years-evaluation-it-helps-the-lungs-but-hurts-the-brain/

Hi William,

I have just posted the link to the report I wrote about my mental nightmare on Trikafta.

Cheers,

Paul

Some of you might remember me. I am Paul (1963), married to Debbie, we are from the Netherlands. My body has Cystic Fibrosis (delta f508/r553x). I have posted regularly on the forum since 2019. In May of 2022, I posted about using Trikafta for 9 months[1]. It was a very positive review. My lung function went up from 20 to 25% FEV1, there was… Read more

Yes, I take Dekas as well.🙂

Many thanks Paul, that’s very helpful. My niece has been taking Dekas vitamins containing all sort of vitamins that help as a supplement, we order them from a doctor based in Netherlands, let me know if this would be of interest to you, I’ll share the link to the website and the doc’s email address.

Thanks William, I wrote a Tale about my experiences with Trikafta. It will appear on our website for free download soon. I am currently waiting for my website operator to upload it and give me the download link.

Hi Jeandarc,

My liver has (as far as I know) had no problems with Trikafta. It was checked 4 times the first year and yearly after that. Some slight enzyme elevation but nothing beyond the normal borders. My dose reduction was caused purely by the mental side effects of Trikafta that were unbearable. And even this reduction did not help. But I…

Read more

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

Hi Paul, that si great to hear how well you are doing with Trikafta. 🤩 may I ask if you have been taking anything to support the liver as well? My 7yo niece with CF didnt have very good liver function test results after taking Orkambi for a few year and now she has just switched to Kaftrio and we wonder what supplements to give her to improve…

Read more

Thanks Kevin, good to hear from you and Jenny. I will post about my experiences with Trikafta soon

Cheers

Paul

Hey Paul! It’s great to hear from you! Jenny stepped down as a moderator a while back, but we still keep in touch. She’s doing really well. I let her know that you posted, and she was really glad to hear from you. @William is the moderator of this forum now, and he would be happy to answer any questions. Glad to have you back!

Hi Jenny,

Are you still on the forum? I apologize for not having responded for such a long time, much has happend and I went through a nightmare of mental side effects from trikafta. I post on the forum soon to tell about it. Hope you are doing well. Debbie and I are holding on to eachother to overcome the situation, and recently with some…

Read more

Hello, CF community!

Rare Disease Day took place at the end of February. This is a nationally recognized event to raise awareness for a wide range of rare disease communities.

Bionews, the parent company of this website, put together a page and a series of videos. Contributors for this are from different communities, and they discussed… 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?