Living with Cystic Fibrosis
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As part of CF week 2011, I have made a video explaining a day in the life of a teenager with cystic fibrosis, to help raise awareness and for people to better understand this genetic disorder that affects so many in the UK. To donate go to www.cftrust.org.uk or uk.virginmoneygiving.com
Video Rating: 4 / 5
January 16th, 2012 - 19:31
Hiya, My cousin is 13 and has CF. She doesnt do any of her care yet, (apart from her enzymes occationally when she goes out with friends) I dont even think she knows that she is life limited and what CF really does to your body as you explain in this video. I just wondered when you started finding this stuff out and doing you i-nub and physio yourself?
January 16th, 2012 - 20:31
@numanumamanman Indeed I’m 28 have CF and live in Canada BC, there’s a fair few things to do for daily care, just have to take it like a boss and keep truckin.
January 16th, 2012 - 21:04
So many big words and pills and stuff how u keep on keepin on will always amaze me u and all other people with life threatening disorders and diseases are the true bawses of this world
January 16th, 2012 - 21:23
i know a girl that died a month ago today from this. 10 years i knew her. RIP laura
January 16th, 2012 - 22:02
@HisDownAssChickk I know people who are worse than that and maintain life, don’t worry.. just keep doing your treatments!
January 16th, 2012 - 22:41
Can you type out the name of the liver pill? I have never heard of it. Is it new or something in the UK that the USA doesn’t have yet? By the way, your hair is really cute!
I am 21 with CF.
January 16th, 2012 - 23:32
i am 11 and i too have cystic fibrosis
January 17th, 2012 - 00:21
To my brother who never reached the age of 20.RIP. and some day they will find a cure.
January 17th, 2012 - 00:37
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January 17th, 2012 - 00:47
KEEP FIGHTING! YOUR AWESOME! -3
January 17th, 2012 - 01:45
She’s gorgeous. Keep on fighting lovely!
January 17th, 2012 - 02:16
My sisters bf and I have Cystic Fibrosis. Were making a fundraiser to find the cure at my school. I really wish that it will work.
January 17th, 2012 - 02:36
This is great! Cf is unfortunately pretty unheard of but for those of us that it directly effects, this video makes an impact. My mother and one of my brothers have CF. Bravo for making this vid!!
January 17th, 2012 - 02:44
Thank you for this. This helps. My daughter is 10 & has CF. For her to see a “teenager” doing this is cool. Thanks again and best wishes.
January 17th, 2012 - 03:22
@HisDownAssChickk Weelllll you are really special. Ofcourse you are feeling “disabled” but you are NOT! At least you lived to be 13 – my little daughter died at the age of 2- she was cronic. Lung and Digestive. You have a life – go…… and thank you for you beautiful post – stay in touch.
January 17th, 2012 - 03:37
great video and quite informative! Im a Married Man and I’ve had CF for the past 33 years and its always enlightening to see the way of life of other CF patients from other country’s and the new and up to date methods that the doctors can give to us – the nebulizer that you had sounds very interresting. ill definately be tracking down one….hope they can ship them out to South Africa?!! keep well and stay positive.
Paul from Port Elizabeth, South Africa
January 17th, 2012 - 04:02
Your so strong.
Im 13 and I have Cystic Fibrosis. My FEVs sit at around 60 percent.
I cry myself to sleep some nights. & at one point, I was on sleeping pills because I was scared tro sleep because I didnt think id wake up.
I cant clean my room without having a coughing attack & needing oxygen.
Your amazing hun. keep your chin up <3
Cysters for life.
January 17th, 2012 - 04:21
woa you’re 1 in 70,000 babe
January 17th, 2012 - 04:32
Your so PRETTY O_O
January 17th, 2012 - 04:37
Great video, I’m 17 and still fighting
Best of luck to everyone who shares this illness, no matter where you are
January 17th, 2012 - 05:05
Please Check out my video it is super important! Breathe Easy
January 17th, 2012 - 05:37
I finally got around to watching this all the way, you seem to have more advanced medication
then I do, so it was kinda cool seeing how they’ve updated.
I still have this old school nebulizer from the 90′s, but I did manage to get a newer one
back in elementary school that runs faster. I’m very interested in the one you got.
Thanks for sharing this with me & the rest of the viewers.
CF is tough and requires lots of patience & responsibility.
I feel it teaches us a lesson in life & independence.
January 17th, 2012 - 05:52
Incredible! Unfortunately I lost my sister to CF when she was just ten years old. My sister’s best friend went on to live until she was over twenty years old, even getting married, before she passed. It’s amazing to see you looking so strong, and being so brave!
January 17th, 2012 - 06:50
I have CF as well, it’s nice to see people here will go out of their way to make a video about it.
I didn’t get to fully watch these, but I’ll get around to it soon!
It’s fun seeing and hearing someone talk about the same disease & medications I take.
Thanks for making this video!
January 17th, 2012 - 07:24
I was diagnosed at 6 weeks with cf and i am 16 now. I have had no hospilisations this year so far and i’m maintaining my cf really well. Luckily, as i am taking care of my body im on very few meds at the moment anyway. Thanks for making this video it’s great to see how much progress has been made towards better treatments. Stay strong! Greetings from New Zealand