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(41 Action News)   Kansas City teen with cystic fibrosis expects life expectancy to double after partaking in trial for experimental drug Trikafta, which is now approved for use for patients 6 years old and over   (kshb.com) divider line
    More: News, Cystic fibrosis, Pulmonology, Annaka Haynes, Dr. Hugo Escobar, cystic fibrosis, couple years, Children's Mercy Hospital, life expectancy  
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2313 clicks; posted to Main » on 25 Jul 2021 at 2:25 AM (12 weeks ago)   |   Favorite    |   share:  Share on Twitter share via Email Share on Facebook



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2021-07-25 6:24:42 PM  
What Annaka may look like in a few years:
Fark user imageView Full Size
So disappointed to be the first.

/In all seriousness, this drug sounds great and I am happy for everyone (Farkers, Farkers' kids, and others) that may benefit from this drug.  Sounds like a pretty unique MOA and a real boon for treatment in CF.
//One of my very first patients in school was a lady with CF still seeing the pediatric clinic for her care.  She was over 40.  That was pretty old for that time, but she had a parent who was a respiratory therapist, which helped immensely.
 
2021-07-25 6:33:38 PM  
MizzouGuy:

Nah brah, 30k/month is to cover "research fees", the cost that it took to bring this drug to market.
 
2021-07-25 9:50:28 PM  

Shirley Ujest: Liinda: Kitty2.0: Sent this to a friend whose grandkid has CF. Thanks subby.

I read about Charlotte's Web cannabinoid treatment on Fark and immediately called my daughter for a friend's child. The family immediately uprooted to Colorado Springs and the little girl (I think she was six at the time) very quickly was having the first actual conversations of her life, had daily seizures decreased by hundreds, and had a quality of life for years that her family never expected. Sadly, the drug quit working so well for her and now she's in a full time care home, but for almost ten years she had an amazing run thanks to a Fark article.

This story about CF is the nicest thing I'll read all day. I should probably get off the internet before it destroys my happy buzz.

Question: I know three people with CF ( one is a cousin's wife, another is a friends kids.) and they have never had seizures that I know of.  Is this common?  I thought CF was pulmonary.


You thought right, it is pulmonary. I believe OP was just relating an example of an article on fark being passed along to have a significant impact on someone.
 
2021-07-25 10:11:34 PM  

MizzouGuy: To all those posting that they have been taking Trikafta, or have kids taking it, curious if you wouldn't mind sharing if your insurer is paying for all or some of it,


I get Tricare through the Army and it pays for ours. 600k per year for 2 kids
 
2021-07-25 10:19:16 PM  
Our kid has CF and she has been on this drug for over a year. She's 38, so there was no age restriction for her, she was approved right away. It has been a boon, and the only conversations I've had with her where she hasn't coughed at all came once that drug had taken full effect. She can now do her streaming stuff without having to stop because she can't breathe and talk for any length of time, or because she's coughing too much. It's amazing and I'm trying to not jinx it but I had to comment here to tell everyone that this drug is a real, true breakthrough against the horrific disease of CF.
 
2021-07-25 10:39:06 PM  
Also want to add that CF affects everything. It's an error in every cell of the body. But the most serious and life-shortening effects usually come from the pulmonary issues. But there are also digestive issues (including diabetes) and reproductive issues that are serious as well. It's a whole body disease but most people concentrate on the pulmonary aspect. My kid was down to 25% lung function in her left lung but now she has normal perfusion in both lungs. That alone is a miracle. But she still has some digestive issues and of course cannot become pregnant. Still no grandkids for us, but that doesn't even bother us, we've had so long to get used to that fact. Anyway, I appreciate not having to worry about more people.
 
2021-07-25 11:06:22 PM  

Hoopy Frood: I read that as "Trikafka", Side effects may include existential dread.


You only metamorphose three times.
 
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