Cystic Fibrosis News Today Weekly Forum Digest

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The other 10%…. FDA approves Trikafta

Oct 21, 2019 01:40 pm | Jenny Livingston

Replies: 0

As I’m sure many of you know, the FDA has approved Trikafta, the long awaited “triple combination” drug from Vertex. This drug will be effective for 90% of the CF population. This is a huge win for the CF community! We have every reason to be thrilled and full of hope!
But as we celebrate together, I think it’s also important to remember the 10% who will not be eligible for this drug due to their specific combination of gene mutations. The battle is not over! We will stick together and continue to fight until everyone has a highly effective therapy option!
Do you or someone you know have a rare or nonsense gene mutation? How do you think we can stay united as a community in order to be sure those in the 10% aren’t left behind?

Debunking the Myths About Vaccine Safety

Oct 21, 2019 07:45 am | Cystic Fibrosis News Moderator

Replies: 0
Tré LaRosa examines the misguided claims around vaccine safety as he urges people to get the flu vaccine this winter. Click here to read more from Tré.
Do you usually get a flu vaccine? If so, how has that been working to you? And if not, why don’t you get a flu shot?

Scientists Hope They Have Found New Form of Cystic Fibrosis Therapy

Oct 21, 2019 07:43 am | Cystic Fibrosis News Moderator

Replies: 0
Scientists have discovered a new way to treat cystic fibrosis that involves delivering artificial proteins to replace the faulty CFTR protein. Read more about it here.
What do you think of this news? Were you aware of this new way to treat CF?

Triple Combo — three week update from Ella Balasa

Oct 18, 2019 05:42 am | Jenny Livingston

Replies: 2
Ella Balasa, a columnist at CF News Today, was recently granted early access to the “triple combo” — the latest CFTR modulator therapy from Vertex, which is currently being evaluated by the FDA.
Here’s what Ella has to say about it:
“I started the triple combo on September 23rd at 25% lung function. I have been followed at Duke for transplant, but have wanted to hold off on being listed until I gave the triple a shot. After starting, I caught what I thought to be a cold and had increased mucus and sinus draining for about 2 weeks, then it started to reduce in volume.
I use 3 liters of oxygen when exercising, and my O2 needs have been about the same so I didn’t expect much improvement after 3 weeks. But I had PFTs done and they increased 4% up to 29%! I was shocked, but so happy! I hope to continue seeing improvement as I know I still have mucus plugs in my lungs.”
Follow Ella’s journey on Instagram at: https://www.instagram.com/thisgirlella/
What are your hopes and expectations for the triple combo?

Yoga for CF

Oct 18, 2019 05:08 am | Jenny Livingston

Replies: 0

I started practicing yoga about 6 years ago and I’ve found it to be a helpful tool in managing my CF, both physically and mentally. One of the best things about yoga (in my opinion) is that it is easily accessible to just about anyone. The poses (asanas) can be modified to fit a person’s level of skill and physical capability. The breath work (pranayama) is helpful in learning to slow down and deepen breathing – which is great for CF lungs!
Do you practice yoga? If so, how has it helped you in your CF journey?