Living with Cystic Fibrosis
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- Опубліковано 26 вер 2024
- 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.virginmoneyg...
Fact: World's Most Gorgeous Woman
You said it!
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.
She's so pretty
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.
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.
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'm a medical student and this was a very useful video , thank you very much ! :)
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
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
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.
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.
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.
why do bad things happen to good people. :(
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
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 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
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!!
Thanks for your very clear explanation - you had my Year 10 class captivated. I think they were pretty stunned by your regime.
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.
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.
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.
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.
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!
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!!
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
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..
Stay strong, I still believe in this world thanks to people like you
I m from Romania and i want to say God bless you and all the people with this genetic disorder.I love you all !!!
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!
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 I'm 12, today I found out that the life expectancy was 37.4. I was scared. I didn't know what to say. My feelings were low and so was my confidence. But all I have to say is if u do have cf never give up always do ur medicines and physio I have a machine called the colobreath and that helps a lot so please don't give up and win the fight.😔 ik we can all do it.
Galaxy Perfect I got cf too I got the vest and air breathing machine from vois and a bunch of pills I have to take if u need me I'll be there for u
Noah minnick thanks for the reply and thank u for saying u will be there for me cos ill be there for u
Galaxy Perfect thanks
Your so brave
Emily Nixon thanks so much, havenyou got cf?
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 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! :)
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!!
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!!
Rest In Peace to Shelley Shephard; Last Thursday, September 27th at 10:27am, 36 years old.
An angel.
Such a beautiful and well-spoken young lady. Thanks for sharing with us! Cheers!
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
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!
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 this. This helps. My daughter is 10 & has CF. For her to see a "teenager" doing this is cool. Thanks again and best wishes.
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.
YOU ARE BRAVE AND STRONG, STAY LIKE THAT CAUSE YOU'RE A PERFECT PERSON
2 and a half weeks ago, i lost a really good friend of mine, tamika, to cystic fibrosis, it is a really hard thing to live with, she was so strong, so beautiful, but she just couldnt fight it anymore, she is always in my mind, heart and prayers
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!
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 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 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.
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
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
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.. :)
my sister recently past away due to cf, she was only 24, i realy think just like my sister u have a great attitude towards cf. keep going strong .
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
thanks for this video. my son (19 days) just got diagnosed with CF and as a parent i have lots of questions about what his life is going to be like. this was very helpful. Thank you.
Morten Fredheim I wish your son all the best God Bless
I'm currently studying my masters degree in the molecular basis of human disease. Ive picked CF as my topic basis. Your video was very informative and helpful, thank you... and good luck to you. They are making amazing break throughs every day with gene therapies and new delivery systems.. hopefully the experts in the research field of CF will have this disease beaten in the near future.
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!
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.
Extremely useful and educational video. Thank you.
You arr SUch an inspiration, please stay strong and keep inspiring others to do the same x
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!
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...
You an adorable and beautiful girl for putting all your regimens on line for girls like me. I grew up with my older sisters friend, a family friend, I loved her, she had cf and Bow my daughter had an abnormal test but the DNA test came back negative. It's just a waiting game now but you make me think and know there is hope for my daughter to grow up and be a beautiful sweet young lady.. Thank you
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.
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!
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 :)
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
My cousin had CF. After 32 years she passed away. It was a very sad time for our families. She was a amazing girl.
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
I listened to your story and I want to say that you are a inspiring person and a very brave woman.
My cuzin is the same age as you and has CF... She was diagnosed at 2 weeks old.... She is taking it hard still and wont take care of herself... :( So I give you props for actually taking care of yourself :) Keep it up it will help you live longer :)
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 :)
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.
You are a true survivor & obviously a strong girl
I can't imagine living with your condition. Stay strong a good luck. Love you👊💓
Well done!! My son was diagnosed two years ago and just started the vest. Fight on sister!!!
I'm also a nursing student who is studying for an exam and I stumbled upon your video.
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! ❤
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.
You did a wonderful job explaining how CF affects you.
Wow. I had no idea CF was this serious. You have to endure so much on a day to day basis. The amount of crap I complain about and all I need to do in the morning is cook bacon and turn a coffee machine on. I hope that young children around the world with CF can view your videos and get some sort of inspiration from them. All the best
I have Cystic Fibrosis too, but I'm fortunate enough to have it rather mildly. Seeing your routines compared to mine make me realise how lucky I am. :) Good luck in everything you do! x
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 strong and confident. I hate it you're living like Darth Vader with the vest, but you inspire a lot of people. Cheers from the U.S. love ya even though I don't know you
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
Ive had cf for 18 years and I always fall asleep with the vest. it's kind of relaxing to me.
One of my friends died from this yesterday and I'm on here looking what CF is, Apparently he didn't know he had this. 33 years old, R.I.P and you and everybody that struggle with this disease Stay Strong, Keep God First and Stay Positive !
I'm here for school
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! :)
God bless you... My best friend has CF. She copes really well and Im proud of her... I obviously don't know how your feeling so i can't really say; ik how u feel. But ik how hard it must be. I watch my best friend cope everyday and all i can do is be there for her and help all that i can. God bless you..... xXx
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 have done a presentation about Cystic fibrosis about a month ago and i kinda feel how you feel, keep it up girl and dont give up!!
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.
My little bro has cystic Fybrosis he is 8 and he has to do all the same things, I am so glad you are doing well
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!
I was diagnosed yesterday. Keep strong!
Thank you so much for this video - i recommend this to doctors who are not familiar with this condition
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.