Awesome video! I'm currently waiting to start Trikafta and getting antsy about it. Waiting on calls from drug company, testing, approval etc. Its nice to hear that it helps with fatigue- which I find the most debilitating thing with CF. Thank you for making a video about trikafta, it's so helpful for CF people who are looking for reviews about it. You are beautiful inside and out!
Great video , thanks for sharing your experience. The rash looked rough! I’ve experienced similar improvements with Trikafta in the last 8 months, it’s a life changing medication for sure
Hey! Thanks for update! I was wondering if you knew anything about how trikafta worked to help with cystic fibrosis? does it edit the gene or something like that? I recently discovered one of my friends little sister had cystic fibrosis and so i've just been trying to look into it as much as possible. Thanks!
I'm so glad that Trikafta helped you!!! I don't have CF but I have narcolepsy (and other chronic illnesses) and I have to make sure that I don't laugh when I'm driving bc I could have cataplexy. You're the first person I've heard of say they have had to limit laughter too. Isn't it a weird concept? I'm glad you don't have to anymore tho! 🥰🥳
It’s got to be stressful to hold back your laughter while you drive! It’s definitely strange to limit laughter, especially if something funny happens and a laugh just escapes haha. Thank you so much for your support and for watching 😊
Do you know if it's possible to have this reaction without narcolepsy? When I laugh I get so weak, if I was at school it would be a few minutes until I could write again, same as texting and using hands in general, and I feel weak in my body too but not that strong. I've heard of cataplexy and I know how it should look like but I've never made the link between the situation and the condition, and googling it isn't the best way to get an approximate answer to see if it's something I should look deeper into or just a normal thing lol
Awesome video! I'm currently waiting to start Trikafta and getting antsy about it. Waiting on calls from drug company, testing, approval etc. Its nice to hear that it helps with fatigue- which I find the most debilitating thing with CF. Thank you for making a video about trikafta, it's so helpful for CF people who are looking for reviews about it. You are beautiful inside and out!
Thank you for leaving such a sweet comment!! Keeping my fingers crossed you'll be on Trikafta soon 🤞🏻 💜
My son has Cytric Fybrosis Ken McGrath
2020 *has* been five years. Loved this video!
I'm glad you liked it! Thanks for watching!!
Momma loves you kiddo! Some of that was rough to watch even though I know how great things are now. You are an amazing person!
Thanks mom! 💜
Great video , thanks for sharing your experience. The rash looked rough! I’ve experienced similar improvements with Trikafta in the last 8 months, it’s a life changing medication for sure
The rash was definitely rough, but completely worth it. I'm so glad Trikafta has been life-changing for you! Thank you so much for watching my video!
Awese video, I'm glad that (despite some hefty setbacks) the new meds are working so well.
I'm glad too! Thanks for watching 😊
Hey!
Thanks for update!
I was wondering if you knew anything about how trikafta worked to help with cystic fibrosis?
does it edit the gene or something like that?
I recently discovered one of my friends little sister had cystic fibrosis and so i've just been trying to look into it as much as possible.
Thanks!
Thank you for posting. I’m day 8 on trikafta and the rash has started 😞
Oh no, I hope the rash wasn't too bad!
I'm so glad that Trikafta helped you!!! I don't have CF but I have narcolepsy (and other chronic illnesses) and I have to make sure that I don't laugh when I'm driving bc I could have cataplexy. You're the first person I've heard of say they have had to limit laughter too. Isn't it a weird concept? I'm glad you don't have to anymore tho! 🥰🥳
It’s got to be stressful to hold back your laughter while you drive! It’s definitely strange to limit laughter, especially if something funny happens and a laugh just escapes haha. Thank you so much for your support and for watching 😊
Do you know if it's possible to have this reaction without narcolepsy? When I laugh I get so weak, if I was at school it would be a few minutes until I could write again, same as texting and using hands in general, and I feel weak in my body too but not that strong. I've heard of cataplexy and I know how it should look like but I've never made the link between the situation and the condition, and googling it isn't the best way to get an approximate answer to see if it's something I should look deeper into or just a normal thing lol
@@analuisa1214 I don't know. I can try to check for you.🥰
Trikafta is game changer but not a game ender
❤️❤️❤️❤️
💜💜💜💜