Відео

Hey I have cystic fibrosis and I want to make a book all about it I would love your input on other subjects I should cover in it! If you could that should be amazing!❤

I cough up a thick white like stone an smell bad

I am 15 and have cf and cf dieaptes

Im turkish and 22 years old ı learned ı have cf but ım very lazy what will ı do ı dont know :(

Trikafta is game changer but not a game ender

So happy I found your channel! ❤ Fellow Cfer here. From what I can remember, I think my peds CF doctor told me that Pulmo makes the mucus more slick so that it’s easier to come out. 😊❤

My son has Cytric Fybrosis Ken McGrath

Mannitol/atrazine and uranium

How long do you neb for? I have CF

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 so much! I haven’t got yet, but trying to get it…

I don't know if you're going to read this, but it's so rare for me to hear someone say that they've pretty much experienced the same things that I have, literally every detail, every small breathing and discomfort, embarrassment, exhaustion... I can understand it, and it's amazing to hear the effects that this remedy gives... I'm from Chile and I'm 17 years old, in my country there are very few people who have accessed trikafta since it is not a medicine that the government provides freely to everyone due to its value and etc, but with my family we are already in the middle of the process to achieve it, it has been very hard, the anxiety is so intense, but I know it will be worth it and I will happily start the treatment in about 1 month, thanks for sharing your experience!! 😊 I'm gonna make a list too hehe

great video!

Thank you for sharing this video about your CF routine, the CFLF hopes that information like this can inspire others to share their stories and routines and destigmatize life with a chronic illness. Thank you so much for sharing! Keep up the good work.

Hey Ginny, Thank you for being so open & honest about life with Trikafta. I really appreciate it 😊 It is really awesome to finally see the c.f community benefitting overseas with major advances in the Cystic Fibrosis world 😊💙 I'm still hoping to get the chance to try Trikafta myself, as are many, many Cystic Fibrosis suffers in New Zealand too 🌹 Sadly in New Zealand, we still "don't" have access to this life saving, "game changer" Trikafta 😔 It's been nearly 10 years since the press release of miracle, life saving, wonder drug..."Orkambi" in the Cystic Fibrosis world... However we still don't have access to Orkambi or Symdeko either 😔 Sadly the few friends I had contact with via fb online, have passed away 😔🌹 This saddens me, as it shouldn't be this way. Guess what I'm trying to say is...us kiwi's can't wait for Trikafta, we need it now. Too much carnage has been spent 😢 My hope & prayer is to see New Zealanders who have Cystic Fibrosis, have access to Trikafta so we can all have a better, brighter future for today, tomorrow, the next day & forever 🌹 I'd love to talk more with you about your amazing journey since taking Trikafta. It sounds like it has really been beneficial for you in the long term. Here's my email: Lillymail.247@gmail.com Well take care, S 🌻

Thank you for posting. I’m day 8 on trikafta and the rash has started 😞

Happy 2 year anniversary!! Please make a Gus intro video

Two years!!! While there may not be happening with CF on a weekly basis to report on, there is still a lot to know. The fact that you work full time is amazing to me. I know it's remote but it's still full time which I never thought you would have the energy for. Plus, you have my GrandGus that you are taking care of. MUST have more reporting on him since he is hilarious, quirky, talkative, etc. Love you kiddo!!!

Hi Ginny, thanks for the update! You’re awesome 👍🏼 What mutation do you have? Sorry if I missed it in the vid 😬

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!

Do you even drink water before doing your vest or chest clearance?

Heyyy☺️I love this video. Finally found someone I can do my treatments with while watching your video lool defo subscribing ✌🏽

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! 🥰🥳

What is that toothpaste squeezy-holdy thing? It may just be the miracle I've been looking for.

Loved how you and Matt take a bite at the same time of a new hello fresh meal and rate it---SO CUTE

Yay the vegetarian life!!!

I’d love to see a day in the life and/or nighttime routine! 😁

obsessed with your PJs

This was so nice to watch. Please do a nighttime routine 🥺

Awese video, I'm glad that (despite some hefty setbacks) the new meds are working so well.

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!

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

2020 *has* been five years. Loved this video!

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