Living with Cystic Fibrosis
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- čas přidán 7. 05. 2011
- 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/fundr...
Fact: World's Most Gorgeous Woman
You said it!
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 :)
thanks so much for this video. I'm currently a medical student and it's often difficult to gain insight into the lives of people with relatively uncommon medical conditions with only text books as information sources. And so I really do appreciate you making this video series. Im sure that what i've learned from you will come in handy when I encounter any CF patients in the future. You're great, and do take care!
+Johnny Wright
Same here man. I'm going through NEMSA right now and i was looking for an answer to a question on my homework. this girl made so much more sense than this MyPearsonLabs nonsense.
8.) The major pulmonary dysfunction in a patient with cystic fibrosis is caused by;
lmao
I am writing a paper on CF and this is very good !!! thank you
Hi Holly! Just like you, I am 18 and I also have cystic fibrosis. Actually, you and I look a lot alike! It was really inspiring to see you putting up this video...I also do most of the same medications you do (including the oh so attractive vest) and I have always found it difficult to talk to other people about my disease, except for those I am closest to. It is really brave of you to be so open about it and to share with the world the reality of our disease. Hopefully you have inspired others about the cause just as you have inspired me. i hope you are doing well, and we will never stop fighting for a cure! :)
Megan Bauer You need for your doctor to prescribe you kalydeco
I give you guys a lot of credit for being so brave. I lost my cousin from cf. In this day and age I hope they find a cure quick. You 2 do kinda look alike
This girl is so sweet and it makes me sit back and just look upon people in disgust who complain about having nice teeth, good looks, and complain about all other trivial cow pat, when others have to go through daily ordeals like this.
I have been educated here today, I didn't realise it's such a struggle everyday for sufferers of CF. All the best to you.
Hi my name is haleigh McGuire and I also have cf I was diagnosed when I was three and I am 12 years old today.I do the same treatments and the same pills as you.kids at school don't understand what we live through and what we do on a daily basis.I have not really told anybody because I am scared that people will judge me.and I think that more people should know about it so they have the opportunity to donate or at least help.I hope that one day I can have a family and live longer than docters say I will and I don't want to be a surviver I want to be surviving.I hope that one cf will no longer stand for cystic fibrosis and that it will stand for "cure found". I wish you the best of luck.
Gorgeous Geeks u probably won't see this but wish u the best of luck and energy bc i know how hard that shit can get, i'm 16 too, hope you're happy or find happiness eventually
I hope all is well your way since this video is old.You're a very beautiful and smart girl. Im so sorry your afflicted with this horrible disease. May God keep you safe.
She's so pretty
I'm studying Cystic Fibrosis for my research, and I just want to thank you for your story. It helped me see how hard it is to live daily life in people who have CF
As a father of a beautiful sweet girl that has CF, I thank you for your wonderful video. It gives me so much hope to see how strong and capable and independant you are.
I'm a medical student and this was a very useful video , thank you very much ! :)
This is such a great overview of what those suffering CF's routine is like and what they deal with daily. I have a friend with CF so this is really helpful.
Thank you so much for this! I'm 18 with CF in Australia and I have such admiration for you speaking so openly about your CF life. You've really inspired me not to shy away from questions about the disease and embrace the fact that I have a perfect chance to raise awareness for CF by being able to answer them in such a personal way. I hope you're staying well! All the best 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 am a nursing student and we are learning about CF. This was a great video, you explained everything so clearly and in a way someone unfamiliar with the CF would understand. Appreciate you sharing your experience. Sending positive energy your way! Keep taking care of yourself, you seem like you are doing a great job balancing this difficult regimen of treatments.
I'm a science teacher near Plymouth and my student teacher just used your video to teach my class about inhereted diseases. I'd just like to say I think you're really brave and explained everything very well indeed. My kids learnt loads because of you. Thank you.
Thank you for this video my girlfriend has cystic fibrosis and I love her very much. I want to know about it so I can be there for her and understand. Thank you
Same here dude its sad thinking of the future
Cameron White and jayle hamilton i wish you 4 guys the best with all my heart, i know its hard but strenght is the best you can have and give if youre a familiar of a person with cf or even a pacient. i seriously wish the best for you and i send you so much love
Cameron white what a GOOD man you are!!!! :)
Btw can you teach other men to be good like you and have respect lol
You are absolutely precious! I am a nursing professor of pediatrics and i am showing your video to my class. Great explanations and visuals! May you have a wonderful and long life! God bless you sweet girl!!
Hiya holly, good explaining about our meds and treatments. i think alot of CF patients wil recognize alot in what you just showd us. keep it up, make it famous, make yourself famous who knows you'll show on national tv some day. you got the looks, you got the spirit.
Just try and don't stop trying to get your dreams. live your life to the fullest.
greetings a fello CF patient from The Netherlands.
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!!
thank you so much for doing this video. I am a NP student and this video is so informative and provides insight into the life with someone living with CF. our school has recommended we watch this video! How cool, your video is part of a university's curriculum. Keep up the hard work, you are truly inspiring.
I absolutely think you are amazing. I am having an exam tomorrow (final year medical student) and will meet a person like you with CF. I will be tested on and will have to talk to that person.
You have taught me more then any text book has ever done, and I thank you for that.
this is such a well put together video. my son who is 10 months has cf. he has just come home from his first hospital admittion for ivs. i found this video inspiring and although cf will always be there, i think its all about the attitude you have with it xx
Holly,
We have a daughter with CF, and it is very inspirational to see someone like you posting up a video for a good cause. Thank you very much.
thank you for sharing your story, I'm a nursing student and I'm currently studying respiratory diseases and this really helps put a face to the problems that in studying. I hope all goes well with you and you remain in good health!
you are very well informed and i hope you continue speaking on this awful disease.you did an awesome job and here's to your fight! you are very strong.
I'm a nursing student, and I stumbled across your video while studying for an exam. I found your video to be so eye-opening and informative; thank you for sharing your story!
thank you for making this video! I also have CF so it's great to see someone else going through what I go through. I'm 15 now, and a lot of the stuff you mentioned In your video really relates to me! There is so much I could say to you right now about your CF and this video, but I cant seem to find the words to explain! but thank you for making people aware that CF isn't just coughing, taking a few tablets and getting better and showing that it's an on-going task that has to be dealt with daily
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 :)
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
As a nursing student I find your videos inspiring.. You're a true advocate for people who suffer with CF. You should be really proud of yourself. Thank you for sharing, it's an absolute privilege
Hi Holly! I'm a nursing student and I clicked on this video to see what Cystic Fibrosis in real life.... I didn't expect to get so inspired! You're an excellent teacher and an inspiration! Thank you and be well
What a lovely girl you are :). You are so open with the congenital condition and so informative too! I have never met anyone with CF before but I'm a carer & wanted to know more about it so thank you for helping me out. I wish you all the best in the future! You can fight off your infection!
Thanks for your very clear explanation - you had my Year 10 class captivated. I think they were pretty stunned by your regime.
My daughter has cf and this video has told me a lot! thank you for posting it and I am disgusted that 50 people have disliked it!!
Id like to start off by thanking you for doing this video. You have enlightened me details of the condition that books cannot explain. You are amazing at explaining the condition and treatments in a way that nearly anyone could understand. I am a nursing student and have been going over the condition in class, but like you said it's a bit difficult to understand. Thank you for fighting, thank you for advocating, and thank you for sharing.
Hi Holly, my uncle died of CF when he was 17 and now I am studying a health sciences degree and covering CF at the moment.. I think you are truly inspirational and I think this video is great for parents with babies with CF.. keep up the great work hun!!
Daisy xxx
i have cystic fibrosis too. this video sums up sooo well what we have to do and go through, keep it up! hope your health stays well, and your healthy within yourself. well done girl! :)
Best wishes to you from a random stranger. I'm glad to have learned of this. I think society needs to know more about this disease.
This is such a devastating disorder. I have a friend who has this and he has two children. Luckily they were born healthy. But it breaks my heart to know he won't be there for his children when they are older. You are so brave to tell your story to the world, thank you. I think more awareness needs to be brought to this disease.
Thank you so much for posting these videos. My four week old daughter was just diagnosed with CF so your information was very helpful. God bless you!
Hey we have CF too! We also have an older sister who has it. It can be tough sometimes but we fight the battle together and it kind of makes it easier to have people around you that knows have you feel & can relate to you. Just keep up the great work & NEVER, EVER give up! We will fight & conquer this battle together 😊💪✊
Thank you, Holly. You have educated me well. You are a strong woman. May God bless you.
You have done a wonderful job teaching us about what you have to go through. You are very smart and beautiful; you must be an inspiration to other CF sufferers. I hope your health improves, and that a cure can be found soon.
Stay strong, I still believe in this world thanks to people like you
This video is amazing!! Thank you for raising awareness. Your strength and character really shines through in this video.
You're also quite beautiful.
I wish you the best!
I have had CF all my life as well! I cope with it very well and love to see others doing so as well! You are inspiring to all people with CF! Well done! :)
You did a great job on this! I lost a friend to CF this past year and it's hard. Wishing you good health!
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!
Many thanks for this informative video, Holly. As a nurse manager, you helped me better assist others.
You're so talented in communications. Your courage, beauty, and care for others shines through every bit of your presentation.
Here goes a virtual hug to wish you the best of health!
/L
I recently lost a friend to CF. It's very heartbreaking, but it gives me so much hope for the others with CF to see you doing so well.
why do bad things happen to good people. :(
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!!
Thank you so much for sharing your story with us! As a nursing student, I found it to be very informative. I agree with the consensus, you are beautiful, seemingly both inside and out. I'll send up some prayers that they find a cure for you and all those that suffer with this horrible disease. Take care.
my best friend has cystic fibrosis and i think you will be an inspiration to her it always puts her down not being able to do as much as everyone else can and having to take some many tablets a day but im always there to support her and help herxx
I do not have CF but this is still really inspiring.. And the amount of comments on here i see of people with CF - I definitely admire you kids! I'm studying medicine and want to improve CF treatment somehow. Hopefully in the near future we'll come up with something better than that cocktail of medications. Thank you for sharing!
Thank you so much for this video, I am doing a report on CF and I have gone through so many resources yet nothing shows me this kind of perspective and information
+shak tanem same
I m from Romania and i want to say God bless you and all the people with this genetic disorder.I love you all !!!
Hi Holly! I just love this video its so relatable! (im 18 and have cystic fibrosis) Its great that you have a positive outlook and I believe this video just goes to show how strong you are as coming out about the illness isn't easy to talk about; I respect that a lot!
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
I listened to your story and I want to say that you are a inspiring person and a very brave woman.
Thank you so much for sharing, I think it is amazing that you are educating people about cystic fibrosis! I have so much respect for you. I wish you the best :)
Thank you so much for doing this video! My boyfriend of 2 months has CF and I've looked up information regarding it. Your video is by far the most informative and personal. This has taught me so much. Thanks again!
Rachel Kirkpatrick 2 months? Damn girl. Y'all are brand new.
very good job thank you... Danny from galdstone oregon 10 years old and fighting every day. 100 days in hospital in the last year. he would love to hear from you..god bless..
I am a physician. I enjoyed your perfect and semiprofessional presentation of CF day to day life story.It helps me to have a better understanding about my CF patient .Good on you Little angel.
Well said Darren! I'm a nursing student too. Very inspiring. I wish you the best Holly!
YOU ARE BRAVE AND STRONG, STAY LIKE THAT CAUSE YOU'RE A PERFECT PERSON
Thank you for posting these videos! My 25 year old brother has a girlfriend who has a 6 year old with CF, and although I work in healthcare, I haven't ever had a patient with it. I wanted to educate myself somewhat, and your videos are very informative :) You seem like a very strong woman, and I hope little Lucy grows up to be as strong as you are.. Keep it up!
You are really informed. Great to see! Taking control of your condition.
Thank you for making this video. I am a third year medical student. Studying for my final today.
I just arrived the chapter of cystic fibrosis and that's why I bumped into your video.
Because of you, the word cystic fibrosis is no longer just a disease name
written on the textbook of genetics but also a life of many human beings.
It urges me to set a goal on myself that it's really important to view patients as a human not as a disease. Thank you very much! Take care! Best wishes!
Loved all of the vids, use them to explain CF to people sometimes, you remind me of my sister, all the best!
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.. :)
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
Such a beautiful and well-spoken young lady. Thanks for sharing with us! Cheers!
Great video. I'm studying to be a physio and getting actual insight into patients lives is hard to come by outside our pracs. Thanks and well done. I learnt a lot.
I am a 40 year old male living in virginia with CF. I love your videos. I am going through the same thing as you are but a lil worse. I am glad that you added a link to give donations because I have faith they will find a cure for this terrible illness soon. I had been doing good with my CF until about a year ago and it has gotten worse. I hope that you will put more videos up soon to see how your doing. I think I might put some up as well. Please email me if you have any questions.
You're absolutely stunning and so admirable . Sharing your day to day life im sure is helping so many people living with it . Stay strong
Thanks so much for these 3 wonderful videos. You're an incredible woman. I hope you're well. xx
You're a strong woman Holly, being able to go through that everyday of your life doesn't look easy...
And trust me when I say that you are going to live an amazing life :)
Inspirational video about the amazing breakthroughs we've made in modern medicine, and how people can put up with such a difficult illness and still be positive after all they have to go through! Truly puts a different perspective on everything.
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
you are so brave for uploading this video! keep on going
You are amazing. Love to here more of your story.
Keep us update with everything. Be well and hope you get better as time goes on
You are so pretty! I pray for the best for you and your disease. You seem like you're very brave, I'm sure this will encourage others with cf to be just as strong. Good video :)
32 and living with CF. Great video to educate people because I think most people don't even know about Cystic Fibrosis. Keep fighting!
i also have cf! currelntly i have been stuggling with it and having a hard time keeping up with my meds. be grateful for what you have! you never know when it could all fall apart...
This is a lovely video, my auntie died of cf when she was 18 and she was beautiful I just came to see what life must have been like
You are a tough girl and beautiful too. I am studying Respiratory Therapy and this video just gave me a push into succeeding through the school. Thank you for the video, even though we may not know what it is like to walk in your shoes, your video teaches a lot and give hope.
ELIAS SIRAJ God bless you❤️🙏💯 NEVER give up on makin da world a better place. You may only be one person, but one after one an so on makes hundreds then thousands. You have to lead.
I can't imagine living with your condition. Stay strong a good luck. Love you👊💓
I have Cystic Fibrosis and I am from the U.S. and I am so seriously impressed with how much you know about your Cystic Fibrosis I am turning 16 soon and each days getting better with being able to tell people about my Cystic Fibrosis! I admire how really open you are about getting awareness out!
Thank you for sharing this info about living with CF. It was most interesting and helpful, god bless you and i shall pray for those who endure like you guys.
Excellent sharing of your perspective. I hope your video helps lots of people!
I could listen and watch you all day. You're an inspiration and you're beautiful in and out. Iwizh I knew you and could give you a hug.
I am a carrier of cf my first daughter has the carrier gene now. Thanks for telling me your story. I will pray for you Holly! ❤
you're positivity is inspiring, well done
I am sorry that you have to deal with this. I hope they can come up with a cure very soon. Stay strong. You are beautiful inside and out and thank you for talking about this.
WOW your really a busy person. I think your a Beautiful Angel. I hope things are going great for you, and I would like to thank you for posting this very informative video. I've learned a lot from you. Take care.
You are incredibly beautiful. Your spirit shines bright within your eyes. Thank you for making this video.
hi there holly this made me cry my sister has cf too,it's been had for our family when she was young i wont go into it but you're a idol stay strong.
My name is Michaela, and I have Cystic Fibrosis. Your three video's were such an eye opener and inspiration. My struggle with CF has been fairly easy compared to others, and I do truly understand what you are going through. I am turning 16 soon and university has been one of my biggest fears. I always thought I wouldnt be able to go, but you have shown me that as long as I make sure my health is first, I can do anything I want and live a regular, healthy life like any other young adult. Thanks.