I have 2 kids with CF, Will and Sarah. Will was the first in our family to test positive back in Oct of 2020.  He was completely a-symptomatic.  We only had him tested because he traveled in a car with a friend that tested positive.  Will remained positive for over 3 weeks with no symptoms.  His sister, Sarah, has yet to test positive.  We… Read more

What do the docs attribute the decreased need for enzymes? I’m wondering if they’ve figured that out yet. Trikafta is bringing new and exciting news in the CF community on a daily basis. Go Vertex!

Has anyone had a blood draw showing a high CK Level? My son, Will, who has been on Trikafta since Oct 2018 recently was hospitalized for very high CK level in his blood. Just prior to the blood draw he lifted weights with a friend. The docs were concerned that the drug may have caused the elevated levels. While in the hospital they… Read more

I have been told that my kids were going to die from the day they were born. I have 2 kids with CF. So for the last 18 years that’s something I’ve had to deal with. Now since the discovery of the drug Trikafta, the death card has been removed from the table. I am wholeheartedly going to continue along the path of happiness and no fear and… Read more

My CF kids will grow up thinking I was a nut because of all the things I was willing to try. We’ve tried Colloidal Silver, low level laser therapy, muscle testing, acupuncture, drum lessons and anything that I thought wouldn’t hurt them. My thought was “nothing we know of now has worked so why not try things outside the norm”. I did… Read more

I totally get what you’re saying. This week my son, with CF, got “normal people sick”! His CF carrier brother got a virus and passed it to him. It’s such a different feeling knowing that now that he’s on Trikafta and his body is functioning more normally, that this sickness is going to pass without major pulmonary setbacks! I’m so tired… Read more

My 12 year old daughter has scars from her 3 surgeries at birth to fix a blockage caused by Maconium Illius. Just recently she mentioned that she wished she had a flat stomach. I know she’s just entering puberty and it’s going to be a rough road, but it broke my heart to hear it. I’ve told her they’re war wounds and she should be proud of… Read more

Participating in Clinical Trials at this time in history is life-changing! I believe participation in trials has an even greater impact on finding a cure than fundraising at this point. The drugs being introduced now WILL CHANGE YOUR LIFE! My son participated in the Trikafta trial and he’s a different person. His life has been renewed. … Read more

The first time my son’s pediatrician heard about him being on the trial for Trikafta, he mentioned the unexpected issue of a change in reproductive health. I was a little surprised but it’s true, we need to re-evaluate how this amazing drug will impact all aspects of our lives! Thank you Vertex and Alex Abela, the scientist that created… Read more

After reflecting on my initial response to the article, I feel the need to apologize. I understand the change will create lots of emotions. I’m just so happy with the results we’ve experienced, all I could do was focus on the good. I know how important mental health for the patient is and I’m just the mom. I don’t know what it feels like… Read more

Wow, wow, wow! I never thought I’d hear such a sad sentence… “I’ve recently come across multiple posts from people who are eligible for Trikafta, but are concerned that with the increase in lung function that is predicted with this drug, they’ll lose disability.” I will pray for the folks that have these thoughts. My son, Will has been on… Read more

I have 2 kid with CF. I had the extreme privilege of meeting some of the top scientist at Vertex as well as top researchers in CF back in Oct 2018. They were amazing. I went to Harvard Medical School to witness the Warren Alpert award ceremony and symposium. The top 5 medical researchers for Cystic Fibrosis were being recognized as the world’s… Read more