such a strong girl for being able to talk about CF and showing everyone how you deal with it.
if it makes a difference, I'm starting a fundraiser at school for CF, so every casual dress day, every school BBQ or outing ect, the money goes to CF. :)
O_O Can I just say that you're the prettiest girl I've ever seen. You really are an inspiration. And one day your efforts to raise awareness of this illness will be acknowledged :D
I urge you to look into using marijuana as a medicinal tool to help with some of the symptoms of CF. I have friends with CF and they say it really helps. Pharma drugs are not good, so limiting the amount can certainly be good. There are many ways of getting it into your system, so some research on your part must be done. I know it can certainly help you and I wish you the best, I can't imagine living with this disease, you inspire us all.
I just watched a video of American's got talent show (2010) and I saw 2 amazing girls with Cystic Fibrosis. I don't really understand it clearly now. Reading about Cystic Fibrosis is the first thing I will do when I wake up tomorrow, but one thing I can not wait is telling you and them that you guys are great, greater than me. You guys really inspired me. I really want you guys to have whatever you want to have in your lives, I really do. G9
Hey thanx a lot, am doing a piece on wut lifelong consequences CF has as an undergrad and this gave me quite an insight. To all sufferers of CF;keep fighting, the help is on its way!
GOD BLESS! Wish you many years to come! My cousin has CF & Battle everyday in her life just as much as yours! Don't lose hope! My cousin is in the hospital at least 10weeks of the year. I dont see how ppl with CF can do this! Needle after needle and nubulizer after nebulizer, Sputum test after sputum test! Alot to do with medical and seems never a normal life! You should go to the Wish Fundation n make a wish! If you then hope the best memories created. Have faith! Miracles can happen! Take care
my youngest sister who is 4 years old right now she has cystic fibrosis too i m scared shes not going to grow up and have a goo life because of cysstic fibrosis
you are very beautiful and i wish you good health my little sister, im physiotherapist , add me on facebook(my facebook account: Far Oukeh) if you need any help :)
My heart goes out to you! I have Cystic Fibrosis as well. I was diagnosed at 2 and grew up in the hospital, but as I've gotten older it's become mild and only is bad when weather changes rapidly or when I get a cold/flu/etc. Like right now I've been sick 3 times in the past 3 months when in the past 6 years I've only gotten sick only once a year. I've read that it can e mild then get worse as you get into adulthood I'm hoping that's not the case. Anyway thank you for posting this video!
I have cystic fibrosis too. It sucks but I've learned to deal with it. Currently I have been admitted to the hospital 2times. First I had to have Iv antibiotics because I was very sick. And my most recent problem has been weight gain. I haven't gained 1 puns in over 2 years. I weigh 61 pounds and I'm 13 years old . I had surgery and they gave me a feeding tube into my stomach . Basically it's like an Iv filled with milkshakes that runs during the night . I've had a hard time but I think I'm get
I also have CF and the only thing I can say is "continue to fight against all evil that happens to you thanks to the CF and try to ignore all the nasty comments and look you get because you are special in a good degree, and think of how many people love you for the persson you are! "
Would like to write to people who have CF and talk about how you have and how your day is as if someone wants, please feel free to write a meddelsand to me here on youtube: D
you poor girl!! that sounds awful. all of that medication. i thaught my gramppys was bad because he has a heart problem and problems with his blood but that must be really awful for you. stay strong x
I was diagnosed around 3 days old. I've been told I wouldn't live long a few times, and would never sing. I've been singing all my life, and I am 17. I am lucky to be alive, and I thank God everyday.
I was diagnosed at 5 weeks old, I have the DF508 mutation, the doctors said I wouldn't live past 2yrs old but here I am! I wish you a long and healthy life :)
Yeah you are an inspiration, I'm a 25yr old male with CF it was really random for me to see someone else taking most of the same meds I take. I take creon 25000, 3 nebulizers a day, 15 different meds. I don't have a physio vest either so my physio is going to the gym 3x a week and going on long walks every day. I'm 26 this year and seem to be in good health, I've never even talked to anyone else with CF before I'd love for you to message me and compare notes! Hope you are well and happy today :)
You are so beautiful, inside and out, and I hope somehow this all gets better for you. I will pray for you everyday, and try to find a place to donate money for CF. Take care.
@TheTexanAtheist I get it....you say this to make everyone upset and take the attention off of the video and on you. But really really think before you say something like that. It really hurts people...although you may not know them, it affects them. And that...if you have even the tiniest bit of a heart, will affect you at some point in your life because it always comes back.
@TheTexanAtheist I don't think she'd want repulsive scum like you in the same room with her, haha. I don't think mucus comes out of your genitals, at least for normal people. Why, when you sneeze does snot come out of your dick? You're a fucking idiot if you were born with this disorder you wouldn't be saying shit.
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?
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
@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.
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.
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!!
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.
@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.
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!
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
i've never known anything about CF till now. i have a new friend who's 3 yr old son has CF so i thought i would educate myself a bit on it. you did a great job. thank you for your help. keep it up and i hope to see more of you on here from time to time!!
Holly My son has CF delta 508 double mutation, he is only 17 mths old so we are in new territory. None of us knew it ran on our families until after his heel prick test. They didn't start this in Bristol until 2007. It was a massive shock but he is a very happt bouncy baby. We are lucky that he is 90% bigger than he should be but he has started to loose a little weight recently. I loved your videos and its great to share with our families. Thank u. I am on facebook Debbie Marie Cogan
I have cf and I am so healthy I haven't been in hopital since I was diagnosed at 3, I am now 17, 18 in 2 months. Wont lie I barely take my medicine or exercise... I feel bad everyone else seems so sick and I am just not cystic fibrosis doesn't effect my life at all :/ Good luck though!
I have CF and iv recently come to a point in my life where I can't cope with the treatments and don't see the point in doing it and would like to know how you cope with it all, thank you x
@oliprescott96 Just know that there are people who support you and want to see you succeed and keep trying. Even if you don't know them, and they don't know you. I was just introduced to the CF community by a guy named Josh. He has a program named Welcome to Joshland. It is awesome, check it out on youtube. He will be putting up some cool videos of an a capella group singing about CF. Hope you can keep motivated with you treatments. I'm rooting for you!
You're so upbeat and positive, I think you're inspiring to anyone living with CF. I know how hard it is but I've noticed that people with CF are more determined and positive than people who are blessed with their health and should know better! Best of luck to you girl! x
What I am scared of is the life expectancy. I take all of my medications everyday (well usually) but I read online that the life expectancy is only 37 years old. Any support? :/
i was diagnosed at 16 years old, and ive known that i had cf for almost two years now. in the past two years, ive been hispitalized 12 times, and i have the micro bacterum and i was on ivs for a year, doing them three times a day. it was crazy.
I have CF as well, this video actually showed me so much on how i related to other patients and i wanted to thank u for that, im 16 and in the US, iv been admitted in the hospital up to 12 times my whole life. With my CF i also developed Diabetes. My diet is a bit ridiculous because i am having to eat high cakorie foods as u said in your video, but i have to eat low carb to manage my blood sugar better. Its hard to deal with this sometime. My little 13 year old sister has this as well which us
i have cf and two of my friends hade it to and died from not doing what they where suposed to do im am one of the top10 who have it n the dallas fortworth distict in texasand im 13
First off u r a vibrant breath of fresh air. :) i have cf n im 27 i live in the US in minnesota.. I am on the list to get a double lung transplant. I have to give u some serious respect. I am pretty guarded on why i let see this much of my life. Its so nice to see im not the only one fighting this uphill battle.. :)
i dont have cf but it is apart of my human bio assignment anf this has been SO helpful. thank you!!! and you are so beautiful!! for anyone suffering from cf, i think you are all so brave! i couldnt imagine going through this! i definately will donate when i save up some money :)
I have CF and I'm 14. I live in Philadelphia Pensylvania and CF truly isn't horrible if you can find things that work for you, and it is great that you're staying positive about it, and for the most part I can too, and I don't know if anyone else experienced this or is currently experiencing it but I am the shortest person in my grade. I am 14 but only 4 feet 8 inches and it is the most frustrating thing in the world. I do my best to get the best nutrition possible but cannot grow, Thoughts?
@JohnathanPennyworth idk but i am the shortest in my grade too and i get made fun of!! i makes me sooo made, even when i tell people the reason i still get picked on ;(
@JohnathanPennyworth idk but i am the shortest in my grade too and i get made fun of!! i makes me sooo made, even when i tell people the reason i still get picked on ;( oh talk to your doctor about cyproheptadine and ask if you can be taken off of all ur steroids ( if have any). I learn steroids make u shorter or don't let u grow as much. Cyproheptidine is a pill that makes you hungry and if you get that it will probably make you hungry and more good food = growth. No steroids+ take cypro= grow
Hey, I have CF and am talking to my local St John ambulance division on CF and wanted to show that all CF patients are different and your video is perfect cause I don't have most your medication and not the Vest, I wanted to ask if it is ok to show your video?
@NewMusicInYourEar if she looks at you like a sicko she isnt worth it!! My bf told me and i think we are closer because of it ya its hard and makes me sad sometimes but its cool i would tell her :)
It was too late for you Megan Tonks! Why?? I hate Cystic Fibrosis so much. It killed her. Se was only 11! I thought people lived till like 30 or something? I guess not. I want to say, You an insperation, to everyone, I am praying for a cure, for you and for Megan... <3 :/ I love you MeggieMoo x
Hello, i have cystic fibrosis and i am 14years old i also have grown the a typical microbacterium and have never heard of anyone else who has :) I had an 8 weeks course of tigeycyclin (IVS) This year and it has been great listening thankyou :) x
you are beautiful, its amazing to see how people live with cf you are so strong, my boyfrien dand his family all have cf, its amazing to see how brave you are, you are so stunning!xxxxx
hey i think ur video is spot on im currently 29 and living with CF and waiting 2 go on the transplant list in Harefield london im going back in 2 hospital today unfortunately i've been in most of the past 2 years but still fighting unfortunately my time is short but with ppl like u hope can be give to all keep up the gd fight :) Rich from poole,dorset xxx
I'm 23 in the USA with CF. I'm told I have very good lungs etc but I have this continuous looming sense of doom due to alleged time-constraints on life that have been continuously imposed upon me since i was young. I live on my own, work 40hrs per week as well as attend school. I take all the medications you listed but do not use the VEST. Time is an enormous issue for me between work, school, treatments and trying to shop for cook and eat the food and sleep. quite overwhelming:(
wow i like your vest. mine only blows up in the front.. but i see yours blows up all the way around. do you remember where you got it? or what company makes them? and what size is it?
I've never had any need for the vest, It's warming to see that you seem to be dealing with CF well enough to make these video's for other people to see what goes on in our lives, being 16 and just starting college I need to ask you if you find it difficult to keep up with education? I did okay in GCSE's but I'm worried incase I fall being due to hospital visits. I find looking on the bright side of things help me a lot in dealing with CF & it seems you do too, I hope you stay well!
Thank you Thank you! I'm a pharmacy student and had to do some research for a treatment plan for a [hypothetical] patient with CF. Very helpful and a lot more fun to watch and listen to a lovely accent than is it to read anything on the internet... easier on my eyes too ;)
Hi there the video was very informative thank you, my friend suffers from CF but never complains or gets upset about it so I try not to ask her all the time, but it's good to research so if she ever has some trouble I can help her, for instance we go to a lot of gigs and festivals etc and she sometimes struggles with her lungs so its good for me to find out what helps, I usually pat her hard on the back to loosen the mucus but maybe massaging would be better?
@MissyMo1996 stay strong ! Im 13 and have CF as well. Im so sorry about all your transplants. Please do your treatments & meds hunny bun ! Breathe easy!
I Also Do Deonase, Vest, Doxycycline, And Cyprofloxasin(Sorry If I Didnt Spell Those Right). Oh and I Use Creon. Plus some more . Youre gorgeous ! Breathe easy !
@floowir - Milk doesn't produce more mucus, its been proven to be a myth that it actually produces anymore mucus or thickens it. And Milk is a good source of Calcium which we can get a lack of as well.
I too have felt led to do some video geared toward CF education. I'm not sure how it will turn out of if i will be able to do it at all. but I am headed in for an admission tomorrow and I plan to do a full series of videos while I'm in there, as long as I can upload them from the wireless. My first one went up tonight.
Well done for staying strong, i know exactly how you feel. I'm 15 and have all ready had to have a heart and lung transplant and am now starting diyalasis because my kidneys are failing. How did you cope with cf and doing your gcse's? i'm having the tube for my diyalasis put in next week and am worrying about the amount of course work im going to miss. Any advice?x
hey I have CF and was looking at you neb. We dont have nebs like that here in the states. It takes forever,especially if u must do several drugs. I had a lung transplant 7yrs ago but they have been failing a long time and are in bad shape. My husband of 13yrs also had CF, we met in the hospital and were combined at the hip from then on. Sadly, this April 2011,
after switching to a really crummy CF center, he passed away. Both of us would of luved that neb. since he worked.
@lilanaprincesspixie It's called an i-neb, it is brilliant as like I say it only takes 2minutes to do, I am lucky that I only have to have one nebulised drug though! I am really sorry to hear that, it's for reasons like that that I have made these videos, I want everyone to have the best care possible and the hope of a cure one day soon! I wish you all the best and hope you a healthy future! Thankyou for watching my video, it means a lot :) Take care x
i'm 15 and have cystic fibrosis and I found this video very useful on what other sufferers do as a routine. I was just wondering where you got your vest from?
@niknac100 I got my vest from a company in england call 'hilrom' If you google 'the vest, hilrom' the webpage should come up :) I'm glad you liked my video thank you for watching it :) Hope you're well! x
my name is zack brown 21 from ojai ca, and still fighting cf... if you have cf and a facebook i would love it if you would add me and chit chat about this suky desease..
@caseyjones343 Thank you :) I try my best to stay well, I have regular IV's though every 3 months which keep me pretty well! Hope you're well! Take care :)
The first time I met someone with CF I made an ass of myself. It was a girl I'd hardly known for 2 minutes and I asked her if she had a chest cold, because she sounded seriously sick. That's when she explained to me that she had CF. I'd never even heard of the disease. Which led me to researching this. This just sounds terrible.
It's not terrible, it's life, and we just have to deal with it the best we can, sure it is a pain, but it's made me who I am today and the bittersweet saying there is always people worse of than I am! I hope things are okay with the girl? I'm sure she wouldn't have been offended, people often think I have asthma or a cold until I explain CF! :)
You're a pretty girl. I admire you for sharing your daily routine and educating people by posting this video. This helped me a lot by understanding cystic fibrosis.
Hot girl...sticky muckus in exess. Interesting.
TheDive99 13 hours ago
awesome i have an exam coming up n this will really help a lot. thanks
emilliondiva 21 hours ago
you are beautiful!
such a strong girl for being able to talk about CF and showing everyone how you deal with it.
if it makes a difference, I'm starting a fundraiser at school for CF, so every casual dress day, every school BBQ or outing ect, the money goes to CF. :)
Keep fighting lovely, you are amazing <3
BaBiiGeM7 1 day ago
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O_O Can I just say that you're the prettiest girl I've ever seen. You really are an inspiration. And one day your efforts to raise awareness of this illness will be acknowledged :D
christopherolalere 2 days ago
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christopherolalere 2 days ago
Drinking milk doesn't increase mucus ?
Missy22Miss 3 days ago
How do you cope with the terminal nature of your illness. Are you afraid of death?
Hepatomancer 3 days ago
I urge you to look into using marijuana as a medicinal tool to help with some of the symptoms of CF. I have friends with CF and they say it really helps. Pharma drugs are not good, so limiting the amount can certainly be good. There are many ways of getting it into your system, so some research on your part must be done. I know it can certainly help you and I wish you the best, I can't imagine living with this disease, you inspire us all.
colerules25 6 days ago
Your an inspiration honey.Hope your well :-).xx
Ritchiejames1 1 week ago
@KatiesSongs123 You will get better, seriously. I will pray for you xxx
PopcornWales14 1 week ago
I just watched a video of American's got talent show (2010) and I saw 2 amazing girls with Cystic Fibrosis. I don't really understand it clearly now. Reading about Cystic Fibrosis is the first thing I will do when I wake up tomorrow, but one thing I can not wait is telling you and them that you guys are great, greater than me. You guys really inspired me. I really want you guys to have whatever you want to have in your lives, I really do. G9
orchidguitar 1 week ago
she's hot..
bezicta 1 week ago
Hey thanx a lot, am doing a piece on wut lifelong consequences CF has as an undergrad and this gave me quite an insight. To all sufferers of CF;keep fighting, the help is on its way!
SmFdeiviss 1 week ago
I wonder how Cystic Fibrosis all started in history and the first person to have it.
kirbymasterEX4 2 weeks ago
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We watched your video in Bio! we all loved it! thank you for teaching us!
Demonhunter185 2 weeks ago
We watched your video in Bio! we all loved it! thank you for teaching us!
Demonhunter185 2 weeks ago
Thanks. I learned a lot about CF
Toocrazyforthisworld 2 weeks ago
You did a wonderful job explaining how CF affects you.
jencruz1192 2 weeks ago
great video, we need more videos like your's to be known...
Alex CF too
SandersKing 2 weeks ago
GOD BLESS! Wish you many years to come! My cousin has CF & Battle everyday in her life just as much as yours! Don't lose hope! My cousin is in the hospital at least 10weeks of the year. I dont see how ppl with CF can do this! Needle after needle and nubulizer after nebulizer, Sputum test after sputum test! Alot to do with medical and seems never a normal life! You should go to the Wish Fundation n make a wish! If you then hope the best memories created. Have faith! Miracles can happen! Take care
Valluco131 2 weeks ago
<3
PhoSanna3 2 weeks ago
my youngest sister who is 4 years old right now she has cystic fibrosis too i m scared shes not going to grow up and have a goo life because of cysstic fibrosis
7418529631314 2 weeks ago
Wow, this is a brilliant video, you are amazing, thanks for all the info. X
fjrose1 2 weeks ago
you are very beautiful and i wish you good health my little sister, im physiotherapist , add me on facebook(my facebook account: Far Oukeh) if you need any help :)
faroughfirouzi88 3 weeks ago
Also you're beautiful and very inspirational!!!
ashyjedi 3 weeks ago
My heart goes out to you! I have Cystic Fibrosis as well. I was diagnosed at 2 and grew up in the hospital, but as I've gotten older it's become mild and only is bad when weather changes rapidly or when I get a cold/flu/etc. Like right now I've been sick 3 times in the past 3 months when in the past 6 years I've only gotten sick only once a year. I've read that it can e mild then get worse as you get into adulthood I'm hoping that's not the case. Anyway thank you for posting this video!
ashyjedi 3 weeks ago
My sister was diagnosed with CF about 2 years ago.
MkFailz 3 weeks ago
You did a great job on this! I lost a friend to CF this past year and it's hard. Wishing you good health!
miraidebbie 3 weeks ago
I dont know of I'm getting any better so please everyone pray for me
KatiesSongs123 3 weeks ago
I have cystic fibrosis too. It sucks but I've learned to deal with it. Currently I have been admitted to the hospital 2times. First I had to have Iv antibiotics because I was very sick. And my most recent problem has been weight gain. I haven't gained 1 puns in over 2 years. I weigh 61 pounds and I'm 13 years old . I had surgery and they gave me a feeding tube into my stomach . Basically it's like an Iv filled with milkshakes that runs during the night . I've had a hard time but I think I'm get
KatiesSongs123 3 weeks ago
Comment removed
triggersprollie 3 weeks ago
Inspiring.
karatasos22cm 3 weeks ago
Dont let Cystic Fibrosis leave you breathless!
degobmxer 3 weeks ago
My sister had cystic fibrosis ,she is 16 and very ill at the moment,i just hope she makes it,im wishsing you my love ,i hope you dont get ill xx
stripeyzebra1999 3 weeks ago
Her explaination of this disease helped me understandi it more.
MultiPCAKES 4 weeks ago
I also have CF and the only thing I can say is "continue to fight against all evil that happens to you thanks to the CF and try to ignore all the nasty comments and look you get because you are special in a good degree, and think of how many people love you for the persson you are! "
Would like to write to people who have CF and talk about how you have and how your day is as if someone wants, please feel free to write a meddelsand to me here on youtube: D
IdaNilssonnn 1 month ago
i am doing a project on cystic fibrosis andf you helped me alot!! :) thank you
I also Subscribed:)
Greetings From Canada
SebbyDTV 1 month ago
My mom died of cf when I was two years old! Keep fighting it! U r amazing! Same with anyone else with the disorder out there, stay strong!
EmonyVamp 1 month ago
hi holly i have cystic fibrois i am 14 x
wonderworld52 1 month ago
:o i was ment to get that vest thingy!, but i live in ireland...so too expensive :(
supersmileyface97 1 month ago
you poor girl!! that sounds awful. all of that medication. i thaught my gramppys was bad because he has a heart problem and problems with his blood but that must be really awful for you. stay strong x
emochickey1 1 month ago
I was diagnosed around 3 days old. I've been told I wouldn't live long a few times, and would never sing. I've been singing all my life, and I am 17. I am lucky to be alive, and I thank God everyday.
EsperamePorFavor 1 month ago
@EsperamePorFavor That's real nice to hear! It's good to defy the odds and live your dreams :) Good luck with your singing career!
harKazoid86 1 month ago in playlist CF
I was diagnosed at 5 weeks old, I have the DF508 mutation, the doctors said I wouldn't live past 2yrs old but here I am! I wish you a long and healthy life :)
harKazoid86 1 month ago
Yeah you are an inspiration, I'm a 25yr old male with CF it was really random for me to see someone else taking most of the same meds I take. I take creon 25000, 3 nebulizers a day, 15 different meds. I don't have a physio vest either so my physio is going to the gym 3x a week and going on long walks every day. I'm 26 this year and seem to be in good health, I've never even talked to anyone else with CF before I'd love for you to message me and compare notes! Hope you are well and happy today :)
harKazoid86 1 month ago
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You are so brave and beautiful. Thank you for raising awareness of CF. I had know idea about the disease before seeing this video. I wish you well.
bsonomaful 1 month ago
You are so brave and beautiful. Thank you for raising awareness of CF. I had know idea about the disease before seeing this video. I wish you well.
bsonomaful 1 month ago
My baby boy has CF. Thank you for posting this.
FalseDisposition 1 month ago
You are so beautiful, inside and out, and I hope somehow this all gets better for you. I will pray for you everyday, and try to find a place to donate money for CF. Take care.
hollowaymccartney 1 month ago
I'm so sorry for your condition.
DevilMayhem666 1 month ago
@TheTexanAtheist Seiously dude go fuck yourself
Jacksonslayer 1 month ago
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hi, i´m Rodrigo from Chile nation, if you want to talk about treatments in CF contact me my facebook is RodrigoZV. bye bye : )
rodrigostoteles 1 month ago
@TheTexanAtheist I get it....you say this to make everyone upset and take the attention off of the video and on you. But really really think before you say something like that. It really hurts people...although you may not know them, it affects them. And that...if you have even the tiniest bit of a heart, will affect you at some point in your life because it always comes back.
frightenedrabbitfan 1 month ago
@TheTexanAtheist I don't think she'd want repulsive scum like you in the same room with her, haha. I don't think mucus comes out of your genitals, at least for normal people. Why, when you sneeze does snot come out of your dick? You're a fucking idiot if you were born with this disorder you wouldn't be saying shit.
x1Fender1x 1 month ago 2
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?
LifeofaStudentNurse 1 month ago
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
numanumamanman 1 month ago
@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.
04foulbeast 1 month ago
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.
elicaroliv 1 month ago
i am 11 and i too have cystic fibrosis :(
morganmair 1 month ago
To my brother who never reached the age of 20.RIP. and some day they will find a cure.
leave13 1 month ago
i know a girl that died a month ago today from this. 10 years i knew her. RIP laura
oliverjumelle 1 month ago 12
@oliverjumelle Was she hot?
TheTexanAtheist 1 month ago
@TheTexanAtheist yup she certainly was
oliverjumelle 1 month ago
@oliverjumelle sorry for your loss
TonyFired 1 month ago
test
comment 6
xxMaxPayne018xx 2 months ago
KEEP FIGHTING! YOUR AWESOME! -3
theunseen2 2 months ago
She's gorgeous. Keep on fighting lovely!
Derpaherpa123 2 months ago 2
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.
beepmekatie2 2 months ago
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!!
qnbeotch 2 months ago
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.
marvie971 2 months ago
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
paulshergoldsmith 2 months ago
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.
HisDownAssChickk 2 months ago
@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.
Llewellan 2 months ago
@Llewellan sorry for ur loss xxx
sparkes4891 1 month ago
@HisDownAssChickk I know people who are worse than that and maintain life, don't worry.. just keep doing your treatments!
elicaroliv 1 month ago
@HisDownAssChickk stay strong xx
sparkes4891 1 month ago
woa you're 1 in 70,000 babe ;)
Dannyisgreatful 2 months ago
Your so PRETTY O_O
Hevander75 2 months ago
Great video, I'm 17 and still fighting ;)
Best of luck to everyone who shares this illness, no matter where you are
gh0steye1 2 months ago
Please Check out my video it is super important! Breathe Easy :)
glitsNglamxoxo 2 months ago
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.
AshleyTheMusician 3 months ago
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!
DemiJoMorcom 3 months ago
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! :)
AshleyTheMusician 3 months ago
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
r0xygirl15 3 months ago
My heart goes out to the people that live with CF. Hopefully a cure will be found
fawnfromdown 3 months ago 10
@fawnfromdown There is now. It's just $294,000 for a year supply of the pill.
dudewithevo 4 weeks ago
you're so pretty
embalmerboy88 3 months ago
i've never known anything about CF till now. i have a new friend who's 3 yr old son has CF so i thought i would educate myself a bit on it. you did a great job. thank you for your help. keep it up and i hope to see more of you on here from time to time!!
mikewrecked 3 months ago
keep fighting with CF, and a very great video very educating, may god give u the strength to fight it so never loose hope :)
xs2shahzeb 3 months ago
You are so pretty!
Africansands2 3 months ago
I've only found out about Cystic Fibrosis today during a Science lesson. I never knew about this.
EddyTheOliveira 3 months ago
You are gorgeous !
theboxinman 3 months ago
Keep going girl, you are extremely brave!
mariejohannesen 3 months ago
Holly My son has CF delta 508 double mutation, he is only 17 mths old so we are in new territory. None of us knew it ran on our families until after his heel prick test. They didn't start this in Bristol until 2007. It was a massive shock but he is a very happt bouncy baby. We are lucky that he is 90% bigger than he should be but he has started to loose a little weight recently. I loved your videos and its great to share with our families. Thank u. I am on facebook Debbie Marie Cogan
TheCogansBristol 3 months ago
with your vest physio machine, what do you do if you go away for the night or a week even? do you take that big machine with you?
kenagal09 3 months ago
I have cf and I am so healthy I haven't been in hopital since I was diagnosed at 3, I am now 17, 18 in 2 months. Wont lie I barely take my medicine or exercise... I feel bad everyone else seems so sick and I am just not cystic fibrosis doesn't effect my life at all :/ Good luck though!
HanghojLisa 3 months ago
I have CF and iv recently come to a point in my life where I can't cope with the treatments and don't see the point in doing it and would like to know how you cope with it all, thank you x
oliprescott96 3 months ago
@oliprescott96 Just know that there are people who support you and want to see you succeed and keep trying. Even if you don't know them, and they don't know you. I was just introduced to the CF community by a guy named Josh. He has a program named Welcome to Joshland. It is awesome, check it out on youtube. He will be putting up some cool videos of an a capella group singing about CF. Hope you can keep motivated with you treatments. I'm rooting for you!
drewbobaloobob 3 months ago
You're so upbeat and positive, I think you're inspiring to anyone living with CF. I know how hard it is but I've noticed that people with CF are more determined and positive than people who are blessed with their health and should know better! Best of luck to you girl! x
KerryBerri1 3 months ago
I have CF. it sucks
wbysniper 3 months ago
and you're very pretty, especially when you smile.
Missnaughty011 3 months ago
This is such a lovely video...thanks for creating it because I have learnt so much, I hope I can find a cure for this illness.
Missnaughty011 3 months ago
What I am scared of is the life expectancy. I take all of my medications everyday (well usually) but I read online that the life expectancy is only 37 years old. Any support? :/
Blondiee976 3 months ago
i was diagnosed at 16 years old, and ive known that i had cf for almost two years now. in the past two years, ive been hispitalized 12 times, and i have the micro bacterum and i was on ivs for a year, doing them three times a day. it was crazy.
superrtaaylor 3 months ago
i have the same bacteria that you do!
superrtaaylor 3 months ago
This is Paris Hilton
ArchdemonsGuild 3 months ago
//eng.wavegenetic.ru/
superhope03 3 months ago
I have CF as well, this video actually showed me so much on how i related to other patients and i wanted to thank u for that, im 16 and in the US, iv been admitted in the hospital up to 12 times my whole life. With my CF i also developed Diabetes. My diet is a bit ridiculous because i am having to eat high cakorie foods as u said in your video, but i have to eat low carb to manage my blood sugar better. Its hard to deal with this sometime. My little 13 year old sister has this as well which us
Dancinsydnee 3 months ago
Aww you are so gorgeous!! I wish you the best of luck!! I am in nursing school so this video helped me a lot! Continue to stay positive pretty girl!
lmgraves100 3 months ago
i have cf and two of my friends hade it to and died from not doing what they where suposed to do im am one of the top10 who have it n the dallas fortworth distict in texasand im 13
DESSERTGECKO 3 months ago
First off u r a vibrant breath of fresh air. :) i have cf n im 27 i live in the US in minnesota.. I am on the list to get a double lung transplant. I have to give u some serious respect. I am pretty guarded on why i let see this much of my life. Its so nice to see im not the only one fighting this uphill battle.. :)
manystylezz1 4 months ago
i dont have cf but it is apart of my human bio assignment anf this has been SO helpful. thank you!!! and you are so beautiful!! for anyone suffering from cf, i think you are all so brave! i couldnt imagine going through this! i definately will donate when i save up some money :)
kjandu100 4 months ago
Wow, you are so beautiful!
Shaytarder 4 months ago
I have CF and I'm 14. I live in Philadelphia Pensylvania and CF truly isn't horrible if you can find things that work for you, and it is great that you're staying positive about it, and for the most part I can too, and I don't know if anyone else experienced this or is currently experiencing it but I am the shortest person in my grade. I am 14 but only 4 feet 8 inches and it is the most frustrating thing in the world. I do my best to get the best nutrition possible but cannot grow, Thoughts?
JohnathanPennyworth 4 months ago
@JohnathanPennyworth idk but i am the shortest in my grade too and i get made fun of!! i makes me sooo made, even when i tell people the reason i still get picked on ;(
sassyalek1 3 months ago
@JohnathanPennyworth idk but i am the shortest in my grade too and i get made fun of!! i makes me sooo made, even when i tell people the reason i still get picked on ;( oh talk to your doctor about cyproheptadine and ask if you can be taken off of all ur steroids ( if have any). I learn steroids make u shorter or don't let u grow as much. Cyproheptidine is a pill that makes you hungry and if you get that it will probably make you hungry and more good food = growth. No steroids+ take cypro= grow
sassyalek1 3 months ago
Hey, I have CF and am talking to my local St John ambulance division on CF and wanted to show that all CF patients are different and your video is perfect cause I don't have most your medication and not the Vest, I wanted to ask if it is ok to show your video?
skybluekid16 4 months ago
@NewMusicInYourEar if she looks at you like a sicko she isnt worth it!! My bf told me and i think we are closer because of it ya its hard and makes me sad sometimes but its cool i would tell her :)
RunNeonTigerTK 4 months ago
Hey I was just wondering, if you have a Boyfriend and you tell him about this?
Because idk if I should to my Gf, because then she lloks at me like a sicko and not as a bf
NewMusicInYourEar 4 months ago
It was too late for you Megan Tonks! Why?? I hate Cystic Fibrosis so much. It killed her. Se was only 11! I thought people lived till like 30 or something? I guess not. I want to say, You an insperation, to everyone, I am praying for a cure, for you and for Megan... <3 :/ I love you MeggieMoo x
LlamaGirl666 4 months ago
Can you write a list of your medications? I'm doing a project on Cysistic Fibrosis and I'm curious.
AmmieGraceRyan757 4 months ago
Hello, i have cystic fibrosis and i am 14years old i also have grown the a typical microbacterium and have never heard of anyone else who has :) I had an 8 weeks course of tigeycyclin (IVS) This year and it has been great listening thankyou :) x
987HorseLover 4 months ago
you should eat avacados they are like 400 calories each and theyre reaaaly healthy :)
Spagoochy 4 months ago
wow you're breath takingly beautiful and very smart and informative. -i am jealous
Spagoochy 4 months ago
you are beautiful, its amazing to see how people live with cf you are so strong, my boyfrien dand his family all have cf, its amazing to see how brave you are, you are so stunning!xxxxx
kenniann97 4 months ago
I love your video (: Check my story out. I have Cystic Fibrosis as well.
I would love to chat with you sometime.
So pretty!
legallybianca 4 months ago
you are really pretty! :)
GREAT VIDEO!!
thegurlygirls 4 months ago
hey i think ur video is spot on im currently 29 and living with CF and waiting 2 go on the transplant list in Harefield london im going back in 2 hospital today unfortunately i've been in most of the past 2 years but still fighting unfortunately my time is short but with ppl like u hope can be give to all keep up the gd fight :) Rich from poole,dorset xxx
MrPoggyp 4 months ago
I am glad to welcome you on a site of association of healthy children ” 65 blue roses “
1956cf 4 months ago
32 and living with CF. Great video to educate people because I think most people don't even know about Cystic Fibrosis. Keep fighting!
mlv8103 4 months ago 20
I'm 23 in the USA with CF. I'm told I have very good lungs etc but I have this continuous looming sense of doom due to alleged time-constraints on life that have been continuously imposed upon me since i was young. I live on my own, work 40hrs per week as well as attend school. I take all the medications you listed but do not use the VEST. Time is an enormous issue for me between work, school, treatments and trying to shop for cook and eat the food and sleep. quite overwhelming:(
spaomalley 4 months ago
wow i like your vest. mine only blows up in the front.. but i see yours blows up all the way around. do you remember where you got it? or what company makes them? and what size is it?
brandimariah72 5 months ago
I've never had any need for the vest, It's warming to see that you seem to be dealing with CF well enough to make these video's for other people to see what goes on in our lives, being 16 and just starting college I need to ask you if you find it difficult to keep up with education? I did okay in GCSE's but I'm worried incase I fall being due to hospital visits. I find looking on the bright side of things help me a lot in dealing with CF & it seems you do too, I hope you stay well!
1888TheBhoy 5 months ago
Thank you Thank you! I'm a pharmacy student and had to do some research for a treatment plan for a [hypothetical] patient with CF. Very helpful and a lot more fun to watch and listen to a lovely accent than is it to read anything on the internet... easier on my eyes too ;)
Thanks again
gymrat3e8 5 months ago
When i get older, i want to donate A LOT OF MONEY to CF things so they can make a cure maybe ...
unfortunatly, i dont have any money.. :( ..
it makes me smile that you are looking so great, happy and positive. And gorgeous!
I wish you the very best!
The reason why i care about CF patients, is because i lost my dearest cousin... at age 15..
MsCocoZaza 5 months ago
Hi there the video was very informative thank you, my friend suffers from CF but never complains or gets upset about it so I try not to ask her all the time, but it's good to research so if she ever has some trouble I can help her, for instance we go to a lot of gigs and festivals etc and she sometimes struggles with her lungs so its good for me to find out what helps, I usually pat her hard on the back to loosen the mucus but maybe massaging would be better?
jamesbooth140390 5 months ago
Wow. You are so pretty :) i wish you all the best in the future and i hope they find a cure soon! xD
BethanyRachelFairley 5 months ago
you are beautiful.
i wish you the very best i cannot imagine what you go through. you are very brave and truly inspirational :)
628eman 5 months ago
Dont you get tired of taking all these pills? How many pills do you take a day??
dublinireland100 5 months ago
@floowir m'yeah good tip, also onions and garlic are great for the lungs (i have cystic fibrosis btw)
7hom 5 months ago
You are a living merical!!! I have diabetes and i have a friend with cf and you all are miricals!!!!
riseaginist321 5 months ago
@MissyMo1996 stay strong ! Im 13 and have CF as well. Im so sorry about all your transplants. Please do your treatments & meds hunny bun ! Breathe easy!
SarahYDanielle11 5 months ago
I Also Do Deonase, Vest, Doxycycline, And Cyprofloxasin(Sorry If I Didnt Spell Those Right). Oh and I Use Creon. Plus some more . Youre gorgeous ! Breathe easy !
SarahYDanielle11 5 months ago
hey i'm in the same boat cf all the way. i didn't know that there was a cf week.
im from georgia .
logangarrison 5 months ago
@floowir - Milk doesn't produce more mucus, its been proven to be a myth that it actually produces anymore mucus or thickens it. And Milk is a good source of Calcium which we can get a lack of as well.
roycegermain 5 months ago
This has been flagged as spam show
stop drinking a milk! antibiotic don't work 100 % with the milk and also, it create more mucus in your body. best of luck
floowir 5 months ago
شكرا لصاحبه الفيديو واتمنى لها الشفاء حيث لدي ابن وابنه مصابين بالتليف البنكرياسي الرئوي
ولكن لدي استفسار عن ستره الصدر من اي شركه وكم قيمتها
وللاسف لا اجيد اللغه الانجليزيه
mr2alsultan 5 months ago
شكرا لصاحبه الفيديو واتمنى لها الشفاء
ولكن لدي استفسار عن ستره الصدر من اي شركه وكم قيمتها
وللاسف لا اجيد اللغه الانجليزيه
mr2alsultan 5 months ago
I too have felt led to do some video geared toward CF education. I'm not sure how it will turn out of if i will be able to do it at all. but I am headed in for an admission tomorrow and I plan to do a full series of videos while I'm in there, as long as I can upload them from the wireless. My first one went up tonight.
CandleWaxidents 5 months ago
He also has the vest and nebulizer and the medicine but he doesn't like any of it at all!!
MsICONiclover 5 months ago
My cousin has CF!!! He's only 3 or so and he goes through A LOT of rough times
MsICONiclover 5 months ago
Well done for staying strong, i know exactly how you feel. I'm 15 and have all ready had to have a heart and lung transplant and am now starting diyalasis because my kidneys are failing. How did you cope with cf and doing your gcse's? i'm having the tube for my diyalasis put in next week and am worrying about the amount of course work im going to miss. Any advice?x
MissyMo1996 5 months ago
This has been flagged as spam show
I have CF too. Check out my vids PLEASE!!!
brooklyngymnast 6 months ago
hey I have CF and was looking at you neb. We dont have nebs like that here in the states. It takes forever,especially if u must do several drugs. I had a lung transplant 7yrs ago but they have been failing a long time and are in bad shape. My husband of 13yrs also had CF, we met in the hospital and were combined at the hip from then on. Sadly, this April 2011,
after switching to a really crummy CF center, he passed away. Both of us would of luved that neb. since he worked.
lilanaprincesspixie 6 months ago
@lilanaprincesspixie It's called an i-neb, it is brilliant as like I say it only takes 2minutes to do, I am lucky that I only have to have one nebulised drug though! I am really sorry to hear that, it's for reasons like that that I have made these videos, I want everyone to have the best care possible and the hope of a cure one day soon! I wish you all the best and hope you a healthy future! Thankyou for watching my video, it means a lot :) Take care x
hollyrosanna 6 months ago
i'm 15 and have cystic fibrosis and I found this video very useful on what other sufferers do as a routine. I was just wondering where you got your vest from?
niknac100 6 months ago
@niknac100 I got my vest from a company in england call 'hilrom' If you google 'the vest, hilrom' the webpage should come up :) I'm glad you liked my video thank you for watching it :) Hope you're well! x
hollyrosanna 6 months ago
wish u the best
goshusuck 6 months ago
@goshusuck Thank you :)
hollyrosanna 6 months ago
MY COUSIN IS AN IDOL <3
gracejedwardxx 6 months ago
@gracejedwardxx Thanks grace :) Hope you're okay, miss you! xxx
hollyrosanna 6 months ago
@hollyrosanna im fine & I hope you are too!x x x miss you more !!!:P
gracejedwardxx 6 months ago
my name is zack brown 21 from ojai ca, and still fighting cf... if you have cf and a facebook i would love it if you would add me and chit chat about this suky desease..
rabbitfighter123 6 months ago
I like your video!!! You look super healthy!!! i've got cf and I make videos too!!!
caseyjones343 6 months ago
@caseyjones343 Awesome!!!
caseyjones343 6 months ago
@caseyjones343 Thank you :) I try my best to stay well, I have regular IV's though every 3 months which keep me pretty well! Hope you're well! Take care :)
hollyrosanna 6 months ago
The first time I met someone with CF I made an ass of myself. It was a girl I'd hardly known for 2 minutes and I asked her if she had a chest cold, because she sounded seriously sick. That's when she explained to me that she had CF. I'd never even heard of the disease. Which led me to researching this. This just sounds terrible.
MCRomg 6 months ago
It's not terrible, it's life, and we just have to deal with it the best we can, sure it is a pain, but it's made me who I am today and the bittersweet saying there is always people worse of than I am! I hope things are okay with the girl? I'm sure she wouldn't have been offended, people often think I have asthma or a cold until I explain CF! :)
hollyrosanna 6 months ago
This has been flagged as spam show
I have CF too, please watch my video.. cimorellitheband even liked it!!!!:)
brooklyngymnast 6 months ago
You're a pretty girl. I admire you for sharing your daily routine and educating people by posting this video. This helped me a lot by understanding cystic fibrosis.
thanks so much
-nursing student
allenzno 6 months ago