CF is rare enough that drug companies don't want to invest in research that won't pay off in sales later. That's why CFF starting channeling money (such as the $60 million Bill and Melinda Gates gave) into private research with smaller drug companies. I can't remember all the facts, but they've already come up with a treatment that works on one common form of CF (I think there's like 60 variations) that effectively erases symptoms. If they can do it for that one, they can do it for the rest
I did a great strides walk today. Right before the walk they announced a girl that was 27 years old had a lung transplant, and tied the knot. Three months later she passed away due to complications. The life expectancy is getting higher, now on to the cure for the disease!!
My Sister has CF and i pray that she will get better every day. It was sad and i was frightened when the doctors said she was going to die at age 15, but now she is heathy and i pray that she will live to be 40 and above. I hope everyone with CF has hope, and do what you want to do, be who you want to be. Live every day to the fullest. THat is what my sister told me
I'm very surprised when I was born in 79, that I was diagnosed within days. Now, they have better and more accurate and precise tools to test. I'm glad you're son doesn't have CF. I wouldn't wish it on my worst enemy.
I deal in reality, not wishful thinking. I do not think there will ever be a cure all of Cystic Fibrosis. Better treatments to help life expectancy, sure. Big Pharma is in the business to make money. My enzymes cost thousands a month, and I'm just 1 person. Do you honestly think that they will let a cure slip past them and risk loosing all that money?
I am a cystic fibrosis researcher and computational scientist. There are deep reasons why CF, and other genetic diseases as well, have not been cured. For an informative essay on why not, visit my channel which will give you a link to a pdf. I can tell you that a cure is coming, but it will require a paradigm shift on behalf of the scientific community first. The data is there, now we need to be able to do computations with it. No ability to compute, no cure. I have an answer.
I have CFRD (cf related diabetes) and am looking for a tablet instead of insulin - do you have any suggestions? I would be very thankfull if you helped me! - I'm 14
I found a website that sells colloidal silver really inexpensive. Its double the product for half of the price. Check it out sacredcolloidalsilver (.com) When your looking for the answer...it's just a click away.
I have CF too. I know as myself I don't see it as a burden. Its more of an eye opener. It makes you realize how special life truly is. And CF doesn't have to hold you back. Just keep up on what you have to do to stay healthy, and you can do ANYTHING you put your mind to. Check out my videos if you need proof.
I have cystic fibrosis and I am a professional barefoot waterskier. Just because you have CF does not mean you get get as much out of this life as everyone else. If you do all of your treatments and never get lazy with them then you will live well over 30s to 40s I promise.
I knew two people who died in their teens from this terrible disease. But frm knowing them i learnt more about life. They were amazing people. R..i..p Ian&bee.
although i do no have CF my sister does i pray everyday for a cure or for the diease to be passed to me for her to be cured im only 16 and she is 20 and having to watch her go through this has been a sad yet good thing for me ive grown stronger and had more faith with god, at 12 i had to come to realize she could die and knew all the pain she was gong through, to all people with cf or people with family members with cf, stay strong and hopefully soon a cure will come soon
thank u so much for this video. my fiancee has cf and we were just told at the dr to start thinking about lung transplant. they said it may not happen for another 15 years but that we needed to start thinking about it. thank you so much it is so good to see others that go through the same battles.
No, CF, to explain briefly and simply, is a disease that affects the lungs and immunity of those who have it. It is something you are born with, and not something that can be contracted later. Usually, if one of the parents of a child has CF, then it is a probability (however small) that the child will be born with it.
No, no, no... it's got nothing to do with whether the parent has CF. It's to do with whether both parents carry the defective CF gene. If they do there is a 1 in 4 chance their child will have CF, a 1 in 2 chance that their child will be a carrier, and a 1 in 4 chance that they will no be a carrier of the gene.
CYSTiC FiBROSiS is a really bad disease. Haley Palmer died at age 12 because of this HORRIBLE disease. Now a guy at my school (6th grade) has CYSTiC FiBROSiS. His name is Keeton Rehl. Please pray for him. Pray for Keeton Pray for Keeton His life expectancy is 16 years of age. So if that is true. He will die in 4 years. Please pray for him. I have been trying to get this around the internet so many people can pray for him!
It is not always the case that anyone who has it will not live past their teens, but it is factual that a lot of people don't. There are people of all ages with CF, adults, not only teenagers and children.
Still, someone I cared for deeply died when she was 14 of CF, so I wish your friend all the best
i have read in this nice video that cystic firbrosis is a genetic disease,,, that is wrong there is nothing known as genetic disease its a genetic disorder.. other than that the video is good :)
I was born with cystic fibrosis too, i may not know these beautiful couragous people but i still feel connected to them and cry when i see their stories
I knew someone with CF. it was really hard watching her struggle to breath all the time. Now every time i hear a cough i think of her...every time i hear an inhaler puff and every time i hear someone complain about there flem bothering them with a cold...i tell them her story.
I think that's the most intelligent thing I've read off anyone who has posted about CF lately. Strong in message and direct to the point - it should be one of the mottos for the CF Foundation
I have recently become insulin impaired so I am now diabetic. I have to inject myself in the morning with insulin and watch what I eat and drink, so more non diet fizzy drinks or sweets. I measure my blood sugar 3 times a day and record the results.
From what I have been told, CF related diabetes is different from normal diabetes. Is anyone both CF and diabetic ?
I have cystic fibrosis (CF) but I am lucky in as much as I have it only midly. Through good health and treatment over the years even with CF I am 38 and I don't expect my health to go downhill anytime soon if at all.
I have friends whom are no longer here who had CF but never made it. So for all of those people with CF, keep on fighting cus you are all special to live and cope with CF.
i have the f***er i hate it im only 13 n i somtimes wanna die cos i hate it hope they find a cure but doubt it for me at lest ive got allot wrong but in lucky in a way in not always in the f'n hospital like some of the unlucky ones
my son die of cf we need to get a cure so nobody has to see the one they love die we missing george so much he was 21 year old when he die in my arms 07/07/2007
Thanks for sharing and I am sure your sons passing was a blessing cause God takes who he wants and when he wants. Your son is in a better place now. I'm sure one day medical science will find a cure and can't I wait to cry tears of joy. My thoughts and my prayers are with your family and friends as that year comes by each and every time and its a time to reflect and to remember. Blessings my friend and all the best.
o0PinKFisH0o, a cure for everything could mean the world to some. It is true thou you cant live the way you are today if you didn't have it. Thanks for sharing but I can understand where your coming from. Just gotta live life to the fullest more and more each and every day.
I'm not talking about a way to live, I'm talking about a way to be, a personality. Growing with CF means living another way, thinking another way, having another way to view things. It means being a lot less superficial and valuing life a lot more than some retarded people who just manage to.. idk... drug themselves, become fat in front of the TV eating McDo and crying when they have to take a walk or living a superficial, materialistic life.
I too can understand, although beleive me I DO want a cure. Though I bleieve my friend would not have had his love for life, his enthusiasm for everything or his ability to forgive everyone for everything they did without knowing he was not long left for this world. He knew he had to cram everything into every available moment before it was too late for him. Most healthy people don't live like that
@o0PinKFisH0o..... I agree. It's very hard sometimes, yet every battle gives me another boost of strength, however for those who do long for a cure, i hope there is one soon!!!!
@o0PinKFisH0o ..... I agree. It's very hard sometimes, yet every battle gives me another boost of strength, however for those who do long for a cure, i hope there is one soon!!!!
@o0PinKFisH0o ..... I agree. It's very hard sometimes, yet every battle gives me another boost of strength, however for those who do long for a cure, i hope there is one soon!!!!
Thanks for the question. Yes they can have children as a carrier. If there are risks and even if they are a carrier my advice would be to consault with a doc first anyway just to be safe. Thanks for the question and blessings to you and your family.
if a cf-person can have children also depends on a few issues. on the one hand most male cf-people are infertile, but also a female may experience difficulties in conceiving if she's at a poor health state. i myself am a 20 year old woman and engaged to a healthy man, we're both looking forward to starting a family
If I recall and with my research with CF the chances of a child getting CF if one parent is postive is one in 600. But there is also chances of being a carrier witch doesnt mean you got CF but your just a carrier. If you want more info please contact me via privite message and I will send you my email and I will get you some info. Take care and blessings.
Thanks for the comment eLeCtRiCrEtArD and I am sure you friend lives each and everyday day to the fullest. Blessings to you and your friends and family.
I am glad to hear you are doing well after your transplant and seems like 10 years ago pretty soon and glad to hear you doing good. Thanks for the insight and the bright side of things from the eyes of someone with CF and has had a transplant. Blessings my friend!.
My thoughts and prayers are with you and your friend's family and their friends my friend keep in mind he is in a better place now and he doesnt have to suffer what this world has on us. Life life to the fullest man and stay strong as we are born to live and we are born to die but we can live for ever if we belive in the Lord. Blessings my friend and all the best.
I have Cystic Fibrosis i don't fit in. alot of people whay i have to take pills whenever i eat. If there is a cure then i need it. I'm nt lieng. my life sucks but hey, life could pe worse! T_T I might die by 16 but i hope i live!
Thanks for sharing bout yourself and I am glad to say and annouce that May is CF awareness month and its pretty sweet to have and we all hope and pray some day there will be a cure. stay strong my friend and you will live for a life time and become a strong leader within our world. Thanks again and blessings my friend.
I am a CF patient too. I was told I was going to die at age five, then seven, and finally 13. However I believed in my own body and lived to see the smiles of my loved ones and haven't had to be admitted since was four. Today I am 19. What I am trying to say is don't limit yourself! Live life how you want to! Try the things you want to! And most importantly BELIEVE in yourself and your body! Don't let Doctors or anyone cut your life early!
I am sorry to hear your mom has CF and that you lost an uncle. I have lost a very very close friend who I loved her very much and she passed away from CF and this year is going to be marking year 4 since she has gone. I feel her presents all the time around me and its a nice feeling have that angel above. Anyone with CF i have ever met have been amazing cause they are good role models showing people how to live life to the fullest each and everyday. thanks again and Blessings.
Thanks for the comment and your very welcome for the video. I hope you enjoyed it as much as I have. Congrats bout getting put on to a transplant list and keep me informed if you could sir. I would love to hear how you progress. God Bless you as well brother.
Im Sana,Shishani1976 wife,or i should say widow,cause my husband RIP,passed away on april 29th.
Im writing u this because i know how important it z 4 us "CFers" to always get courage & patience from each other.
My late husband was the kindest,sweetest person i've ever known.He was diagnosed 7 years ago,that's 1 year after we got married,imagine my pain!We never complained,we lived our life day by day, treasuring every single moment!
I know you have heard this countless times but thank you for this video. Now I can explain CF better. My daughter is 7 months old and diagnosed at 3 months.
Thanks for the message and a thank you is better than no thank you.. and I would like to say back YOUR WELCOME!!.. I am glad that it will help and sorry to hear bout your baby.I wish you all the best and most of all her and the lives that she is bout to bless and touch each and every second, min,hour, and everyday in her life time. Thanks again for the comment and blessings my friend. CF is out there for a reason and only the creator knows what that reason is.
Thanks for your comment and I am sorry to hear you got two family members that have to live this life but I am sure they live the life as everyone else and just more to the fullest. Take care my friend.
Thanks for the comment and I am very glad to hear your brother is a fighter. A lot of kids at that age dont know what they want to do. Keep encouraging him and he will stay strong and strong as ever.
heres my story- i remember i was diagnost with cystic fibrosis when i was 6 so i had a big chance o dying. my mother was sick to her stomache. i was in the hospital for a month and when i found out i had it i felt like my life changed forever. i started out with 2 enzymes to take than 3 than 4 now 5. i am now 10 years old my life changed alot. i breath through a thing called a flutter 2 times a day and take a breathing treatment twice it takes about 20 min. sometimes i hav a treatmet caled toby.
Thanks for sharing your story. I am glad you shared it so others can see what the life of a person of CF has to live with. Thanks again and blessings and prayers are with you each and everyday. Take care and thanks again.
Thanks for the comment and thanks for the encouragement to the others out there with CF. I hope you the best and I hope someday they will find you a tx for a set of lung(s). Take care my friend and thanks again.
Thanks for your comment and thanks again for bring in someone who is a HUGE POWERFUL inspiration to the CF word on your posting. Take care and I wish you all the best. Stay strong as there is soon to be a cure just one day soon.
Thanks for your posting and I am sorry to hear you got a liver Disease to chase behind you with your CF. That can be hard and drag a person down. I am sure your a great Leader and role model for the rest around you for what you have to deal with. Thanks again for sharing and blessings and prayers.
I hope and pray she lives life to the fullest each and everyday and that she lives a long lasting life time that you both can share the memories on it. Take care brother.
I HATE how they always give an 'average life expectancy' for someone with CF. It's different for everyone depending on how bad/severe the disease effects them!
It makes me feel like when curious people say, so you're only going to live till you're thirty?
I think the median life expectancy is 30 years, that translates to (in layman's term) - 50% of the patients with CF will survive beyond 30 years, but the other 50% will not. How long a particular person is going to live depends on several factors as you pointed out, need to be mentioned as well.
They say that cause they can and its cause Science and medicine are always crossing paths and its stupid sometimes but its cause that is the way socitey wants to look at things. They want to make everyone feel better and look better all the time and the drug suppliers just become more and more richer and the poor just get poorer (such as myself).
I can see the anger you got over medicine and science. It is to bad they got to cross those paths together so many times over and over again. well the best thing is to live the life you want to live and live it to the fullest. Just anything negative can have an impact on your life time down the road keep that in mind. Take care my friend.
titsandbeer93 sorry to hear about Amanda and just keep in mind my friend she is in a better place now and all you can focus on is the memories that you and her had and all the good times. you will see her again someday soon. Blessings my friend.
Some dont live long lives true but most dont look at his like that.. they look at it as live life to the fullest each and every day, hour, min, down the the bang on second. I had a friend i was very close to who passed on from CF and she was the happiest gal you would met. Now she is looking down on me making sure im doing things right.
I have a four year old that was diagnosed at 6 days old. Thank you for this video and the awareness that is brings. ELijah is an amazing boy, I think God gives these kids a little "something" extra to help them in their journey. May God continue to bless you.
You are upmost welcome for seeing this video and it was a pleasure to share it. I dont have CF myself but I know of many who do and its a deadly thing but one day God will give a cure. I pray that Elijah will stay strong and over come any battles he has with his CF. Take care and God bless.
At our surf school we taught people with CF how to surf. A Foundation sponsered it. They say the Ocean air and water helps their lungs and breathing. It was so fun, and the little kids are tuff as nails. I learned alot. and we hope to do it again. Were in Santa Cruz Ca.
Hey Surfnakd23 that is really something and thanks for sharing and sorry for such a long response time I have been super busy lately with work and other things. Glad to hear that and I really hope you can do that again some time. Id love to see pictures or videos too if your up for sharing. Take care and blessings from Canada
Thank you for posting this video. I lost tw beautiful daughters in 2002, Meghan was eight and Nicole ws twelve. I hav a third daughter that's now 5 and doing wonderful. Watching the courage of these little girls is amazing. to everyone strugling with what we call the, "MONSTER", hang in there. My prayers are with you all......
Thanks for your comment and sorry to hear about your daughters. It is a very hard thing to deal with when it comes from family and most of all the humans you helped create. thanks for your prayers and blessings and prayers back to you my friend.
I am 28 years old with CF. this last year hasn't been so good but, I lost a brother with CF also who went to heaven at only 19. He donated his lungs to research hoping they would find a cure before it was my time to go! all we can do is hope now! GOD BLESS
Thanks for your comment and I am sorry to hear about your brother and well just got to member the falling ones are all in a better place now and when God feels its ready to take them he does. I just lost a cosin this morning who was 3 months old due to illness and its a hard thing on the family. I would like to say thank you to your bro for giving his lungs like that. God Bless as well and all the best.
I lost both my aunt and unle to CF. I never met my aunt as she was only 11, my uncle was 46. He opted to not get a lung transplant as it could be used for someone younger. My grandfather and I both thank you for this video.
I am sorry to hear about the deaths in your family and CF is very sad way of going but God takes us all for a reason and we never know when our day or min or second will come.. Stay strong my friend and your very welcome for the video as I got it from a support group that I am part of. Happy Holidays.
Glad to hear your living your CF life to the fullest and its good to see you come on here and comment how good life is even if you got CF or cancer etc. Thanks for the comment and God Bless my friend. Prayers to you.
I am 14 i struggle from CF i take pills evry day chest precussion in hailers and i have naisil polips so please all you unmaiired singles out there get yourself tested before you et married sor you kids wont suffer like I do.
Thanks for sharing my friend just for letting people know that it can happy at any age such as your self your 14 and you are explaining what you have to take everyday. That is a big step in life. thanks for sharing and happy holidays.
I agree with you and I am coming up 23 this next month and I dont have CF but have lost many to it and its a powerful uncure able matter that will be one day cure able and cant I wait to scream for joy when they do. Take care and thanks for sharing.. Blessings and Happy Holidays
Oh my goodness! That was so sweet. I was diagnosed with CF at about 5 months, and since then, I've been relitivly healthy. This made me so happy! HELP FIND A CURE!
God bless you guys. my son Nathan was diagnosed w/ CF at 10 weeks old through a bad rash that made him look as though he'd been burned in acid, then turned his legs green!!It was horrible. I will be praying for your family. God bless you. I hope many will see your video.Beautiful.
I am sorry to hear about your son but I am sure he will do fine and that is an interesting way of finding out a discovery to something else you wouldn't think of.
Thanks. Yeah, it was pretty horrible, but yet we were thankful for it, because his liver was failing, and it could have been much worse. they said he was malnurished and had zinc/vitamin defisancy thus the rash. We had his geno tpye testing done, and he does have a more rare/strnager-severe form of cf. Did you get a chance to see is video? Yours is beautiful.God bless you.
yes I did and it made me think and thanks for posting it and I will have to watch it again and encourge others around to watch it as well. This video was not my own but was posted in a support group I was part of and I asked premisson to steal it and I did and I had to make it public as it is one of these under the covers diseases today. I will keep your son in my prayers.
My daughter was diagnosed with Cystic Fibrosis at the age of 3. She is now 5 years old. Since her diagnosis, I have learned to make every day count! Thank You for creating this video. I have goosebumps!
That is good to hear that you find ways to know how everyday is some what the same with the meds but you make sure that day is done to the fullest and know that you did something that day to make your kid feel great to be around. thanks again for your comment. season greetings.
My uncle died of CF before I was born. I sometimes wonder what he was like. It's tough. My heart goes out to you all. I'm praying for you, and stay strong. May all your dreams come true for you all!
I will keep you in my prayers if that is alright with you for you to be mentally strong and physically and most of all emotionally as that is one of the hardest things. May I suggest to you and anyone else to listen to Rockin' in the Free world by Neil Young. Its a powerful song to hear. Read the lyrics that go with it. Email me and I can email you it if you want. Cheers.
Thanks for you comment and yes CF is a hard thing and it does suck everyone I know that has it says that they just deal with it and move on with there daily life everyday. Some of the best people out there have CF and you would never been able to guess it unless they told you. Thanks again for your comment and take care.
nice veido, my brother jacob has CF i am always so scared he is gonna die and i worry that when he does he wont no i love him cuz we fight a lot, like normal sibliings
sometimes fighting is a way that us humans show our love for someone or something. Some day when you guys are fighting you should just randomly put in the fight and say "Hey Jacob, I love you brother" and see what his reaction is and than ask for a hug and give him a kiss when you get the hug if he gives you one.
one of the girls in my class died of cystic fibrosis on saturday. i just went to her funeral today it was so sad. i didn't even know she had it because she was always so happy. what exactly is it?
CF is a hereditary disease that mainly affects the lungs and digestive system, causing progressive disability and for some, early death. Formerly known as cystic fibrosis of the pancreas, this entity has increasingly been labeled simply "cystic fibrosis". that is the simple way of doing if you got any more questions email me in a privite message and i will give you my personal email.
i remebr my cousin telling me a lady at her old work a few years ago found out she had cf at 50 years old thats a long time to live and not no u even have cf
hey iam hannah and i have cf i and dream to be a singer, everyone has dreams and whatever people say or do to put you down on them dont listen people sayed to me that i would never be able to lead the life i am life i am living now but i'am living it!! every now and then take i step back and look at everyone you love and hate i think about do you really hate take person? is it worth hating that person?
thanks for your comment it is a great one if you where to ask me. I hope you all the best in becoming a signer because that is something that is a talent and well I dont got it in that line of my life. I wish you the best and good luck in all your goals. Just because you have CF it doesnt mean you cant do thing such as that. just might be a bit more harder at first.
Any time Hannah and when you become rich and famous and even now if you are already recording id love to hear some of your singing compossed. send me a privite message and I will send you along my email or msn witch ever you wish to get. Take care my friend and until again Prayers and blessings are with you.
They need to advertise this on national tv, and let people know what it is and what they go through through in their lives! I have cystic Fibrosis and CF related Asmha, Diabetes and Osteoperosis and doing well. And there are alot of people that dont know anything about CF which i'd be happy if more people would know more of CF. (if that makes sence!)
god bless toute le people effected with this dreadful disease..a beau Welsh singer Josh Jones si un inspiration to CF sufferers..He has climbed Kilamanjaro risk de freez climate e infections, aussi supports CF raising money for cure. Josh'sbeautiful voix ewriting career,sucess..wish he has long vis,see dream as singer.HaS,compassion,humanitarian.pray with toute de mon cour forcure . Haveelove famille e amis fill heart an believe god sees you thru..bless all wish for a cure..amis lisette marie
Lisette28 thanks for the post and I agree we do need to keep in prayer for a cure and not just for CF but for all the diseases and cancers out there in the world and that no one needs to suffer and one day there will be a cure for them all and that we won't have to suffer in this world.
Look at the young, beautiful and talented french singer Gregory Lemarchal, who died at 23 last week of cystic fibrosis. He realized his dream to be singer. France cries him.
RIP Gregory. Now France knows how cruel cystic fibrosis is.
Peacedreaming, I am sorry to hear about your sister and it is very hard when it comes to family because its like your losing something you always had and always thought you would have when you get older. I got one of those cookie things from a Asian places today and this is what the paper said and I hope it comes true to all of us. "Focus on the color purple this week to bring you luck". Well most of us know Purple is the CF color of awareness and I am staying positive.
for sure bro. always stay positive. thank you sooooooo much for that. it means so much to me. he was one of my best friends. i never experienced such a down time in my life. the most sad ive been in awhile. still grieving. it sux. this is the closest person ive lost. thanks again man and stay strong
anytime and that is what I am here for is to keep the up beat still in the blood flow. Take care brother. Prayers are with you and your family and friends at this time of grieving this loss.
I am sorry to hear about your friend blisteringcold1 it is very hard on a person and I have lost a friend to CF just coming on 3 years this year and I am already freaked because I got lots of friends that have it and I hope they do find a cure with it.
My name is Maria, and I got CF. I'm lucky, beside my daily treatment, I live a perfectly normal life. I'm not often sick, and thank God for that. Help us find a cure. Please.
Thanks for the post Maria for the post. Its nice to see the ones with CF talking to others about it. Have a great day. A cure will come within time and God will provide one soon we pray.
CF is rare enough that drug companies don't want to invest in research that won't pay off in sales later. That's why CFF starting channeling money (such as the $60 million Bill and Melinda Gates gave) into private research with smaller drug companies. I can't remember all the facts, but they've already come up with a treatment that works on one common form of CF (I think there's like 60 variations) that effectively erases symptoms. If they can do it for that one, they can do it for the rest
blueskiesandsun 6 months ago
DO A WEB SEARCH ON:
charles h. miranda OR:
charlesthepoet2003
THANKS.
charlesthepoet2004 7 months ago
I did a great strides walk today. Right before the walk they announced a girl that was 27 years old had a lung transplant, and tied the knot. Three months later she passed away due to complications. The life expectancy is getting higher, now on to the cure for the disease!!
Unitedstatesilove 8 months ago
My Sister has CF and i pray that she will get better every day. It was sad and i was frightened when the doctors said she was going to die at age 15, but now she is heathy and i pray that she will live to be 40 and above. I hope everyone with CF has hope, and do what you want to do, be who you want to be. Live every day to the fullest. THat is what my sister told me
GTAproductions1000 9 months ago
When my son was an infant they thought he had CF. They ran a battery of tests and thank the good lord he did not.
Stay strong!
ClutchFan1971 10 months ago
@ClutchFan1971
I'm very surprised when I was born in 79, that I was diagnosed within days. Now, they have better and more accurate and precise tools to test. I'm glad you're son doesn't have CF. I wouldn't wish it on my worst enemy.
cysticboy28 9 months ago
I deal in reality, not wishful thinking. I do not think there will ever be a cure all of Cystic Fibrosis. Better treatments to help life expectancy, sure. Big Pharma is in the business to make money. My enzymes cost thousands a month, and I'm just 1 person. Do you honestly think that they will let a cure slip past them and risk loosing all that money?
cysticboy28 10 months ago
i hate having this
carbonfootprintmyass 1 year ago
So many people have died from this, i'm 16 with CF. I want to live old and see the world change.
peetahp3 1 year ago
My brother died from Cystic Fibrosis on the 9th May 2004.
Im only 15 now and im just starting to realise that hes never going to walk through my door and hug me again :'/ </3
Need a cure, No human being should be put through that stress and pain. Especially Children.
iLOVEYOUBRO</3
RIP KEVIN PAUL SMITH
laalaawiilson 1 year ago
My brother died from Cystic Fibrosis on the 9th May 2004.
Im only 15 now and im just starting to realise that hes never going to walk through my door and hug me again :'/ </3
Need a cure, No human being should be put through that stress and pain. Especially Children.
iLOVEYOUBRO</3
RIP KEVIN PAUL SMITH
laalaawiilson 1 year ago
@laalaawiilson aww sorry.
ImSoFreakingAwsome 11 months ago
I am a cystic fibrosis researcher and computational scientist. There are deep reasons why CF, and other genetic diseases as well, have not been cured. For an informative essay on why not, visit my channel which will give you a link to a pdf. I can tell you that a cure is coming, but it will require a paradigm shift on behalf of the scientific community first. The data is there, now we need to be able to do computations with it. No ability to compute, no cure. I have an answer.
bonnarj7 1 year ago
I have CFRD (cf related diabetes) and am looking for a tablet instead of insulin - do you have any suggestions? I would be very thankfull if you helped me! - I'm 14
wasupitswill 2 years ago
in memory of Beki my brave beautiful girl who lost her fight with C.F in June 08 aged 12, my shining star X
gymrachel 2 years ago
I found a website that sells colloidal silver really inexpensive. Its double the product for half of the price. Check it out sacredcolloidalsilver (.com) When your looking for the answer...it's just a click away.
GodmadeSilver 2 years ago
This has been flagged as spam show
im 14 and i have it as well
xoxoandrea25 2 years ago
ghfghgf
vante404 2 years ago
I have CF too. I know as myself I don't see it as a burden. Its more of an eye opener. It makes you realize how special life truly is. And CF doesn't have to hold you back. Just keep up on what you have to do to stay healthy, and you can do ANYTHING you put your mind to. Check out my videos if you need proof.
GravityNinjaPsych 2 years ago
I have cystic fibrosis and I am a professional barefoot waterskier. Just because you have CF does not mean you get get as much out of this life as everyone else. If you do all of your treatments and never get lazy with them then you will live well over 30s to 40s I promise.
bambambarefooter 2 years ago 4
I hope they come up with a cure.
I have CF =D
HollyMyGolly 2 years ago
Someone i kno has Cystic Fibrosis=( I just wish her the best luck!! Shes only 8 months...
laurenskittyrox 2 years ago
Dont worry. With the advancements they have right now with CF she will live a great healthy life :)
GravityNinjaPsych 2 years ago
I knew two people who died in their teens from this terrible disease. But frm knowing them i learnt more about life. They were amazing people. R..i..p Ian&bee.
xshexyxox 2 years ago
although i do no have CF my sister does i pray everyday for a cure or for the diease to be passed to me for her to be cured im only 16 and she is 20 and having to watch her go through this has been a sad yet good thing for me ive grown stronger and had more faith with god, at 12 i had to come to realize she could die and knew all the pain she was gong through, to all people with cf or people with family members with cf, stay strong and hopefully soon a cure will come soon
Solution729 3 years ago
thank u so much for this video. my fiancee has cf and we were just told at the dr to start thinking about lung transplant. they said it may not happen for another 15 years but that we needed to start thinking about it. thank you so much it is so good to see others that go through the same battles.
csemt07 3 years ago
my first love had CF can any one forget their first love :-( I hope one day the cure for this desise will be found
bakinka80 3 years ago
i have CF .... =]
xxstaceychillin07xx 3 years ago
she didn't develop it as an adult,she had it all along,
she has MILD CF
ketreena 3 years ago
My mom's good friend was diagnosed with this as an adult. It doesn't just affect children, you can develop it as an adult.
C3H2P8 3 years ago
No, CF, to explain briefly and simply, is a disease that affects the lungs and immunity of those who have it. It is something you are born with, and not something that can be contracted later. Usually, if one of the parents of a child has CF, then it is a probability (however small) that the child will be born with it.
gribae 3 years ago
No, no, no... it's got nothing to do with whether the parent has CF. It's to do with whether both parents carry the defective CF gene. If they do there is a 1 in 4 chance their child will have CF, a 1 in 2 chance that their child will be a carrier, and a 1 in 4 chance that they will no be a carrier of the gene.
tkw251070 3 years ago
You can't develop it as an adult. You are born with it. Maybe you are confusing it with MS.
tkw251070 3 years ago
ali08x 3 years ago
It is not always the case that anyone who has it will not live past their teens, but it is factual that a lot of people don't. There are people of all ages with CF, adults, not only teenagers and children.
Still, someone I cared for deeply died when she was 14 of CF, so I wish your friend all the best
gribae 3 years ago
you can count on a prayer from me. My friend died age 15 of this horrible disease. May whichever god you believe in be with you and with keeton
Maksimfan 3 years ago
i have read in this nice video that cystic firbrosis is a genetic disease,,, that is wrong there is nothing known as genetic disease its a genetic disorder.. other than that the video is good :)
Cutebessi 3 years ago
cutebessi..I have Cystic Fibrosis...its often referred to as a genetic disease...
cffighter86 3 years ago
I was born with cystic fibrosis too, i may not know these beautiful couragous people but i still feel connected to them and cry when i see their stories
CFGirl85 3 years ago
I knew someone with CF. it was really hard watching her struggle to breath all the time. Now every time i hear a cough i think of her...every time i hear an inhaler puff and every time i hear someone complain about there flem bothering them with a cold...i tell them her story.
not everyone gets oxegen for free
094013503 3 years ago
"Not everyone gets oxygen for free".
I think that's the most intelligent thing I've read off anyone who has posted about CF lately. Strong in message and direct to the point - it should be one of the mottos for the CF Foundation
gribae 3 years ago
I have recently become insulin impaired so I am now diabetic. I have to inject myself in the morning with insulin and watch what I eat and drink, so more non diet fizzy drinks or sweets. I measure my blood sugar 3 times a day and record the results.
From what I have been told, CF related diabetes is different from normal diabetes. Is anyone both CF and diabetic ?
JasonB1969 3 years ago
I have cystic fibrosis (CF) but I am lucky in as much as I have it only midly. Through good health and treatment over the years even with CF I am 38 and I don't expect my health to go downhill anytime soon if at all.
I have friends whom are no longer here who had CF but never made it. So for all of those people with CF, keep on fighting cus you are all special to live and cope with CF.
JasonB1969 3 years ago
Jason, awesome to hear that your still kicking and fighting at 38! thats awesome man
cffighter86 3 years ago
i have the f***er i hate it im only 13 n i somtimes wanna die cos i hate it hope they find a cure but doubt it for me at lest ive got allot wrong but in lucky in a way in not always in the f'n hospital like some of the unlucky ones
johnh394 3 years ago
my son die of cf we need to get a cure so nobody has to see the one they love die we missing george so much he was 21 year old when he die in my arms 07/07/2007
maggierosej 3 years ago
Good day Maggierosej,
Thanks for sharing and I am sure your sons passing was a blessing cause God takes who he wants and when he wants. Your son is in a better place now. I'm sure one day medical science will find a cure and can't I wait to cry tears of joy. My thoughts and my prayers are with your family and friends as that year comes by each and every time and its a time to reflect and to remember. Blessings my friend and all the best.
rugby85 3 years ago
@maggierosej im sorry
durshell101 1 year ago
I don't want a cure for CF. Without it, I would not be who I am today. It's priceless.
o0PinKFisH0o 3 years ago
o0PinKFisH0o, a cure for everything could mean the world to some. It is true thou you cant live the way you are today if you didn't have it. Thanks for sharing but I can understand where your coming from. Just gotta live life to the fullest more and more each and every day.
rugby85 3 years ago
I'm not talking about a way to live, I'm talking about a way to be, a personality. Growing with CF means living another way, thinking another way, having another way to view things. It means being a lot less superficial and valuing life a lot more than some retarded people who just manage to.. idk... drug themselves, become fat in front of the TV eating McDo and crying when they have to take a walk or living a superficial, materialistic life.
o0PinKFisH0o 3 years ago
It means living experiences that forms a different personality, a different way to be than those who don't live those experiences.
It means being a source of inspiration for those who see that we can manage to live "normally" in spite that we have FK.
It means being much more "life-intelligent" than almost every people around us.
It means a lot of things that are a blessing IMO.
o0PinKFisH0o 3 years ago
I too can understand, although beleive me I DO want a cure. Though I bleieve my friend would not have had his love for life, his enthusiasm for everything or his ability to forgive everyone for everything they did without knowing he was not long left for this world. He knew he had to cram everything into every available moment before it was too late for him. Most healthy people don't live like that
Maksimfan 3 years ago
@rugby85 the future can be a little harsh is all
ketreena 1 year ago
fuck u oOPinKFisHOo ur one person who shouold die or get CF n know the pain ass hole
johnh394 3 years ago
WTF retard I have it.
o0PinKFisH0o 3 years ago
And when you'll grow up you will maybe understand that all the pain is in the way you see your situation and the idea that you decide to get of it.
o0PinKFisH0o 3 years ago
@o0PinKFisH0o..... I agree. It's very hard sometimes, yet every battle gives me another boost of strength, however for those who do long for a cure, i hope there is one soon!!!!
LostDistractions 1 year ago
This has been flagged as spam show
@o0PinKFisH0o ..... I agree. It's very hard sometimes, yet every battle gives me another boost of strength, however for those who do long for a cure, i hope there is one soon!!!!
LostDistractions 1 year ago
This has been flagged as spam show
@o0PinKFisH0o ..... I agree. It's very hard sometimes, yet every battle gives me another boost of strength, however for those who do long for a cure, i hope there is one soon!!!!
LostDistractions 1 year ago
my cousin has cf and she is 8 but i have a question if someone has cf are they a carrier to and is it posible for them to have children?
gabby543211 3 years ago
Good day Gabby543211,
Thanks for the question. Yes they can have children as a carrier. If there are risks and even if they are a carrier my advice would be to consault with a doc first anyway just to be safe. Thanks for the question and blessings to you and your family.
rugby85 3 years ago
@rugby85 A member of my family has
CF and he has been told because he has CF he will never be able to have children. I thinks it's different for men and women who have it.
CkSkaters07 1 year ago
if a cf-person can have children also depends on a few issues. on the one hand most male cf-people are infertile, but also a female may experience difficulties in conceiving if she's at a poor health state. i myself am a 20 year old woman and engaged to a healthy man, we're both looking forward to starting a family
quodli 3 years ago
What are chances that child have CF if one of the parents have CF?
sofronijev 3 years ago
Good Question Sofronijev,
If I recall and with my research with CF the chances of a child getting CF if one parent is postive is one in 600. But there is also chances of being a carrier witch doesnt mean you got CF but your just a carrier. If you want more info please contact me via privite message and I will send you my email and I will get you some info. Take care and blessings.
rugby85 3 years ago
Thanks for answering me.I was looking for that but i couldn't find the answer... If i have more questions i will PM you.Take care...
sofronijev 3 years ago
i have a best friend with this..Good luck to all of you and God bless
eLeCtRiCrEtArD 3 years ago
Thanks for the comment eLeCtRiCrEtArD and I am sure you friend lives each and everyday day to the fullest. Blessings to you and your friends and family.
rugby85 3 years ago
Hi. Ihave cf and had a transplant in 1999.i m doing fine! So there is hope.I,m sad for all friends with cf we lost! Hold on to hope!
pyrskorp 3 years ago
Good day pyrskorp,
I am glad to hear you are doing well after your transplant and seems like 10 years ago pretty soon and glad to hear you doing good. Thanks for the insight and the bright side of things from the eyes of someone with CF and has had a transplant. Blessings my friend!.
rugby85 3 years ago
Thanks for the kond words. keep up the good faith.greetings here from sweden! to all of you!
pyrskorp 3 years ago
my best friend died of this C F 4 days ago, he was due to have transplantation surgery but he didn't make it, may he rest in peace...
Quixpeed 3 years ago
Good day Quixpeed,
My thoughts and prayers are with you and your friend's family and their friends my friend keep in mind he is in a better place now and he doesnt have to suffer what this world has on us. Life life to the fullest man and stay strong as we are born to live and we are born to die but we can live for ever if we belive in the Lord. Blessings my friend and all the best.
rugby85 3 years ago
I have Cystic Fibrosis i don't fit in. alot of people whay i have to take pills whenever i eat. If there is a cure then i need it. I'm nt lieng. my life sucks but hey, life could pe worse! T_T I might die by 16 but i hope i live!
PurpleChao 3 years ago
Good day PurpleChao,
Thanks for sharing bout yourself and I am glad to say and annouce that May is CF awareness month and its pretty sweet to have and we all hope and pray some day there will be a cure. stay strong my friend and you will live for a life time and become a strong leader within our world. Thanks again and blessings my friend.
rugby85 3 years ago
I am a CF patient too. I was told I was going to die at age five, then seven, and finally 13. However I believed in my own body and lived to see the smiles of my loved ones and haven't had to be admitted since was four. Today I am 19. What I am trying to say is don't limit yourself! Live life how you want to! Try the things you want to! And most importantly BELIEVE in yourself and your body! Don't let Doctors or anyone cut your life early!
AlexisDark 3 years ago 6
my mom has cystic fibrosis and so did my uncle he died i thank God my mom is still here these people are truly amazing.
Tory584 3 years ago
Good day Tory584,
I am sorry to hear your mom has CF and that you lost an uncle. I have lost a very very close friend who I loved her very much and she passed away from CF and this year is going to be marking year 4 since she has gone. I feel her presents all the time around me and its a nice feeling have that angel above. Anyone with CF i have ever met have been amazing cause they are good role models showing people how to live life to the fullest each and everyday. thanks again and Blessings.
rugby85 3 years ago
i'm so sorry thank so much for this vid thanks.
Tory584 3 years ago
Thank u 4 this clip, i have CF & i am 32 years old & am about to be added on the transplantation list, God be with US all
shishani1976 3 years ago
Good day Shishani1976,
Thanks for the comment and your very welcome for the video. I hope you enjoyed it as much as I have. Congrats bout getting put on to a transplant list and keep me informed if you could sir. I would love to hear how you progress. God Bless you as well brother.
rugby85 3 years ago
Hey rugby85,
Im Sana,Shishani1976 wife,or i should say widow,cause my husband RIP,passed away on april 29th.
Im writing u this because i know how important it z 4 us "CFers" to always get courage & patience from each other.
My late husband was the kindest,sweetest person i've ever known.He was diagnosed 7 years ago,that's 1 year after we got married,imagine my pain!We never complained,we lived our life day by day, treasuring every single moment!
Now i'm waiting 4 da day we r 2gether again=)
shishani1976 3 years ago
I know you have heard this countless times but thank you for this video. Now I can explain CF better. My daughter is 7 months old and diagnosed at 3 months.
iluhmahbabyautumn 3 years ago
Good day iluhmahbabyautumn,
Thanks for the message and a thank you is better than no thank you.. and I would like to say back YOUR WELCOME!!.. I am glad that it will help and sorry to hear bout your baby.I wish you all the best and most of all her and the lives that she is bout to bless and touch each and every second, min,hour, and everyday in her life time. Thanks again for the comment and blessings my friend. CF is out there for a reason and only the creator knows what that reason is.
rugby85 3 years ago
This was very informative. I have two family member with CF.
chieftalentofficer 3 years ago
Thanks for your comment and I am sorry to hear you got two family members that have to live this life but I am sure they live the life as everyone else and just more to the fullest. Take care my friend.
rugby85 3 years ago
my lil bro has cf hes 8 and im so proud of him. hes a real fighter
hayleee2008 3 years ago
Hey Hayleee2008,
Thanks for the comment and I am very glad to hear your brother is a fighter. A lot of kids at that age dont know what they want to do. Keep encouraging him and he will stay strong and strong as ever.
rugby85 3 years ago
heres my story- i remember i was diagnost with cystic fibrosis when i was 6 so i had a big chance o dying. my mother was sick to her stomache. i was in the hospital for a month and when i found out i had it i felt like my life changed forever. i started out with 2 enzymes to take than 3 than 4 now 5. i am now 10 years old my life changed alot. i breath through a thing called a flutter 2 times a day and take a breathing treatment twice it takes about 20 min. sometimes i hav a treatmet caled toby.
972kittycat 3 years ago
Hey 972kittycat,
Thanks for sharing your story. I am glad you shared it so others can see what the life of a person of CF has to live with. Thanks again and blessings and prayers are with you each and everyday. Take care and thanks again.
rugby85 3 years ago
i have cf been in hospital so many times i think i have cf bit bad then some people but i cope with it very well...good luck u lot who have cf..=]
9DaNe9 4 years ago
Hey 9DaNe9,
Thanks for the comment and thanks for the encouragement to the others out there with CF. I hope you the best and I hope someday they will find you a tx for a set of lung(s). Take care my friend and thanks again.
rugby85 3 years ago
i'm 31 and have cystic fibrosis..
Je suis greffé bi-pulmonaire depuis le 8 janvier 2005..!! Marseille AP-HP Sainte Marguerite France..!!
Thanks...!!
Blundell83 4 years ago
Hey Blundell83,
Thanks for your comment and thanks again for bring in someone who is a HUGE POWERFUL inspiration to the CF word on your posting. Take care and I wish you all the best. Stay strong as there is soon to be a cure just one day soon.
rugby85 3 years ago
im 13 and i have cf
Blahkishma 4 years ago
and i have liver disease
Blahkishma 4 years ago
Hey Blahkishma,
Thanks for your posting and I am sorry to hear you got a liver Disease to chase behind you with your CF. That can be hard and drag a person down. I am sure your a great Leader and role model for the rest around you for what you have to deal with. Thanks again for sharing and blessings and prayers.
rugby85 3 years ago
my girlfriend has CF
i hope that she lives as long as possible for someone with cf
frballz 4 years ago
Hey frball,
I hope and pray she lives life to the fullest each and everyday and that she lives a long lasting life time that you both can share the memories on it. Take care brother.
rugby85 4 years ago
I HATE how they always give an 'average life expectancy' for someone with CF. It's different for everyone depending on how bad/severe the disease effects them!
It makes me feel like when curious people say, so you're only going to live till you're thirty?
Feckkkk, can't you just leave that part out.
Grr makes me sad and angry.
foolaroundtime 4 years ago
I think the median life expectancy is 30 years, that translates to (in layman's term) - 50% of the patients with CF will survive beyond 30 years, but the other 50% will not. How long a particular person is going to live depends on several factors as you pointed out, need to be mentioned as well.
lifeline911 4 years ago
They say that cause they can and its cause Science and medicine are always crossing paths and its stupid sometimes but its cause that is the way socitey wants to look at things. They want to make everyone feel better and look better all the time and the drug suppliers just become more and more richer and the poor just get poorer (such as myself).
rugby85 4 years ago
Good day foolaroundtime,
I can see the anger you got over medicine and science. It is to bad they got to cross those paths together so many times over and over again. well the best thing is to live the life you want to live and live it to the fullest. Just anything negative can have an impact on your life time down the road keep that in mind. Take care my friend.
rugby85 4 years ago
I just found out that a girl I know died, if only I would have known I could have helped her. Rest in peice Amanda
titsandbeer93 4 years ago
titsandbeer93 sorry to hear about Amanda and just keep in mind my friend she is in a better place now and all you can focus on is the memories that you and her had and all the good times. you will see her again someday soon. Blessings my friend.
rugby85 4 years ago
its very sad that most people CF will not live a very long life
beggo321 4 years ago
Some dont live long lives true but most dont look at his like that.. they look at it as live life to the fullest each and every day, hour, min, down the the bang on second. I had a friend i was very close to who passed on from CF and she was the happiest gal you would met. Now she is looking down on me making sure im doing things right.
rugby85 4 years ago
I have a four year old that was diagnosed at 6 days old. Thank you for this video and the awareness that is brings. ELijah is an amazing boy, I think God gives these kids a little "something" extra to help them in their journey. May God continue to bless you.
LindyLouWhoWylie 4 years ago
Hey there LindyLouWhoWylie,
You are upmost welcome for seeing this video and it was a pleasure to share it. I dont have CF myself but I know of many who do and its a deadly thing but one day God will give a cure. I pray that Elijah will stay strong and over come any battles he has with his CF. Take care and God bless.
rugby85 4 years ago
Thanks...he can use all the prayer he can get. It means so much to us that others care as much as we do...
LindyLouWhoWylie 4 years ago
At our surf school we taught people with CF how to surf. A Foundation sponsered it. They say the Ocean air and water helps their lungs and breathing. It was so fun, and the little kids are tuff as nails. I learned alot. and we hope to do it again. Were in Santa Cruz Ca.
surfnakd23 4 years ago
Hey Surfnakd23 that is really something and thanks for sharing and sorry for such a long response time I have been super busy lately with work and other things. Glad to hear that and I really hope you can do that again some time. Id love to see pictures or videos too if your up for sharing. Take care and blessings from Canada
rugby85 4 years ago
Thank you for posting this video. I lost tw beautiful daughters in 2002, Meghan was eight and Nicole ws twelve. I hav a third daughter that's now 5 and doing wonderful. Watching the courage of these little girls is amazing. to everyone strugling with what we call the, "MONSTER", hang in there. My prayers are with you all......
choosdad 4 years ago
Good afternoon Choosdad,
Thanks for your comment and sorry to hear about your daughters. It is a very hard thing to deal with when it comes from family and most of all the humans you helped create. thanks for your prayers and blessings and prayers back to you my friend.
rugby85 4 years ago
I am 28 years old with CF. this last year hasn't been so good but, I lost a brother with CF also who went to heaven at only 19. He donated his lungs to research hoping they would find a cure before it was my time to go! all we can do is hope now! GOD BLESS
shakeitdestiny 4 years ago
Good day Shakeitdestiny,
Thanks for your comment and I am sorry to hear about your brother and well just got to member the falling ones are all in a better place now and when God feels its ready to take them he does. I just lost a cosin this morning who was 3 months old due to illness and its a hard thing on the family. I would like to say thank you to your bro for giving his lungs like that. God Bless as well and all the best.
rugby85 4 years ago
God bless your brother for is graciousness. Keep up the good fight, all of our lost loved ones are shinig down on us with smiling faces.... Russ
choosdad 4 years ago
I lost both my aunt and unle to CF. I never met my aunt as she was only 11, my uncle was 46. He opted to not get a lung transplant as it could be used for someone younger. My grandfather and I both thank you for this video.
sarahb1127 4 years ago
I am sorry to hear about the deaths in your family and CF is very sad way of going but God takes us all for a reason and we never know when our day or min or second will come.. Stay strong my friend and your very welcome for the video as I got it from a support group that I am part of. Happy Holidays.
rugby85 4 years ago
i am 18 with cf i was diagnosed at birth i am married living a pretty happy life
mustangfan6918 4 years ago
Good day my friend,
Glad to hear your living your CF life to the fullest and its good to see you come on here and comment how good life is even if you got CF or cancer etc. Thanks for the comment and God Bless my friend. Prayers to you.
Cheers and Happy Holidays.
rugby85 4 years ago
un Married*****************
yodren 4 years ago
I am 14 i struggle from CF i take pills evry day chest precussion in hailers and i have naisil polips so please all you unmaiired singles out there get yourself tested before you et married sor you kids wont suffer like I do.
yodren 4 years ago
Thanks for sharing my friend just for letting people know that it can happy at any age such as your self your 14 and you are explaining what you have to take everyday. That is a big step in life. thanks for sharing and happy holidays.
rugby85 4 years ago
You are welcome. Thanks for sharing this vid
eo
yodren 4 years ago
Cute kids , im 43 with cf now , its a bit of a struggle , but with CF the mainthing is really keep breathing.
I miss my friends who couldnt tho.
acenl1964 4 years ago
I agree with you and I am coming up 23 this next month and I dont have CF but have lost many to it and its a powerful uncure able matter that will be one day cure able and cant I wait to scream for joy when they do. Take care and thanks for sharing.. Blessings and Happy Holidays
rugby85 4 years ago
Oh my goodness! That was so sweet. I was diagnosed with CF at about 5 months, and since then, I've been relitivly healthy. This made me so happy! HELP FIND A CURE!
KyoSohmaLuver1106 4 years ago
how old are you now?
lemohar 4 years ago
14 years old as os November.
KyoSohmaLuver1106 4 years ago
God bless you guys. my son Nathan was diagnosed w/ CF at 10 weeks old through a bad rash that made him look as though he'd been burned in acid, then turned his legs green!!It was horrible. I will be praying for your family. God bless you. I hope many will see your video.Beautiful.
booboosbaba 4 years ago
hello Booboosbaba,
I am sorry to hear about your son but I am sure he will do fine and that is an interesting way of finding out a discovery to something else you wouldn't think of.
rugby85 4 years ago
Thanks. Yeah, it was pretty horrible, but yet we were thankful for it, because his liver was failing, and it could have been much worse. they said he was malnurished and had zinc/vitamin defisancy thus the rash. We had his geno tpye testing done, and he does have a more rare/strnager-severe form of cf. Did you get a chance to see is video? Yours is beautiful.God bless you.
booboosbaba 4 years ago
yes I did and it made me think and thanks for posting it and I will have to watch it again and encourge others around to watch it as well. This video was not my own but was posted in a support group I was part of and I asked premisson to steal it and I did and I had to make it public as it is one of these under the covers diseases today. I will keep your son in my prayers.
rugby85 4 years ago
thank you so much. please keep in touch with me. God bless you.
booboosbaba 4 years ago
My daughter was diagnosed with Cystic Fibrosis at the age of 3. She is now 5 years old. Since her diagnosis, I have learned to make every day count! Thank You for creating this video. I have goosebumps!
Heloisegp 4 years ago
Good day Heloisegp,
That is good to hear that you find ways to know how everyday is some what the same with the meds but you make sure that day is done to the fullest and know that you did something that day to make your kid feel great to be around. thanks again for your comment. season greetings.
rugby85 4 years ago
My uncle died of CF before I was born. I sometimes wonder what he was like. It's tough. My heart goes out to you all. I'm praying for you, and stay strong. May all your dreams come true for you all!
ghillies4life 4 years ago
awhh i this video is so gudd bt it was sad
RaCH880909 4 years ago
my sister ♥
i love her shes my hero
shes to young
im not strong enough god help me help her
butterflychiqx3 4 years ago
Hello my friend,
I will keep you in my prayers if that is alright with you for you to be mentally strong and physically and most of all emotionally as that is one of the hardest things. May I suggest to you and anyone else to listen to Rockin' in the Free world by Neil Young. Its a powerful song to hear. Read the lyrics that go with it. Email me and I can email you it if you want. Cheers.
rugby85 4 years ago
This is an awesome video
I have CF as well
its really sucks but i deal with it
taytay224155 4 years ago
Hey Taytay224155,
Thanks for you comment and yes CF is a hard thing and it does suck everyone I know that has it says that they just deal with it and move on with there daily life everyday. Some of the best people out there have CF and you would never been able to guess it unless they told you. Thanks again for your comment and take care.
rugby85 4 years ago
thanx=]
groolkoala23 4 years ago
Anytime my friend, blessing to you and your brother. Much loves from Canada
rugby85 4 years ago
yes good point. again, thanks for the good video. i hope it will help raise awareness. take care & hopefully a cure will be here soon =D
DevastatorKnight 4 years ago
nice veido, my brother jacob has CF i am always so scared he is gonna die and i worry that when he does he wont no i love him cuz we fight a lot, like normal sibliings
groolkoala23 4 years ago
hey Groolkoala23,
sometimes fighting is a way that us humans show our love for someone or something. Some day when you guys are fighting you should just randomly put in the fight and say "Hey Jacob, I love you brother" and see what his reaction is and than ask for a hug and give him a kiss when you get the hug if he gives you one.
rugby85 4 years ago
one of the girls in my class died of cystic fibrosis on saturday. i just went to her funeral today it was so sad. i didn't even know she had it because she was always so happy. what exactly is it?
nattyiscool 4 years ago
hey Nattyiscool,
CF is a hereditary disease that mainly affects the lungs and digestive system, causing progressive disability and for some, early death. Formerly known as cystic fibrosis of the pancreas, this entity has increasingly been labeled simply "cystic fibrosis". that is the simple way of doing if you got any more questions email me in a privite message and i will give you my personal email.
rugby85 4 years ago
I've got CF, just got out of hospital. I try never to let CF get in the way of anything :D
ElMurphio 4 years ago
i remebr my cousin telling me a lady at her old work a few years ago found out she had cf at 50 years old thats a long time to live and not no u even have cf
karenszac 4 years ago
Good day Karenszaz,
I am very sorry to hear that and I am very happy to see how long she lived a happy and great life thou. I am thankful that God has blessed her well.
rugby85 4 years ago
i have a mild case of cf but i suck at breathing and dont need to breath much. i no how they feel
samas107 4 years ago
hey iam hannah and i have cf i and dream to be a singer, everyone has dreams and whatever people say or do to put you down on them dont listen people sayed to me that i would never be able to lead the life i am life i am living now but i'am living it!! every now and then take i step back and look at everyone you love and hate i think about do you really hate take person? is it worth hating that person?
dogermad 4 years ago
hey Hannah,
thanks for your comment it is a great one if you where to ask me. I hope you all the best in becoming a signer because that is something that is a talent and well I dont got it in that line of my life. I wish you the best and good luck in all your goals. Just because you have CF it doesnt mean you cant do thing such as that. just might be a bit more harder at first.
rugby85 4 years ago
thanks:) abd i am going to try as hard as i can :)
dogermad 4 years ago
Any time Hannah and when you become rich and famous and even now if you are already recording id love to hear some of your singing compossed. send me a privite message and I will send you along my email or msn witch ever you wish to get. Take care my friend and until again Prayers and blessings are with you.
rugby85 4 years ago
my best friend died of CF just about 3 months ago
I miss her so much...
chaotickittie14 4 years ago
They need to advertise this on national tv, and let people know what it is and what they go through through in their lives! I have cystic Fibrosis and CF related Asmha, Diabetes and Osteoperosis and doing well. And there are alot of people that dont know anything about CF which i'd be happy if more people would know more of CF. (if that makes sence!)
sexi0tiger01984 4 years ago
my home boy dylan has cf and right now hes in the hospital he told me he was coughing up blood i hope he comes out of it all right
titeassjon 4 years ago
tell ur friend wenever he has a lung bleed to drink lots of cold water/ or anything that is cold like ice chips
just recently it was really bad for me
doorbell789 4 years ago
god bless toute le people effected with this dreadful disease..a beau Welsh singer Josh Jones si un inspiration to CF sufferers..He has climbed Kilamanjaro risk de freez climate e infections, aussi supports CF raising money for cure. Josh'sbeautiful voix ewriting career,sucess..wish he has long vis,see dream as singer.HaS,compassion,humanitarian.pray with toute de mon cour forcure . Haveelove famille e amis fill heart an believe god sees you thru..bless all wish for a cure..amis lisette marie
lisette28 4 years ago
Lisette28 thanks for the post and I agree we do need to keep in prayer for a cure and not just for CF but for all the diseases and cancers out there in the world and that no one needs to suffer and one day there will be a cure for them all and that we won't have to suffer in this world.
rugby85 4 years ago
French name of cystic fibrosis is mucoviscidose.
luciole92 4 years ago
Look at the young, beautiful and talented french singer Gregory Lemarchal, who died at 23 last week of cystic fibrosis. He realized his dream to be singer. France cries him.
RIP Gregory. Now France knows how cruel cystic fibrosis is.
luciole92 4 years ago
This video made me cry.
My sister had CF. She past away when she was 9.
I miss her everyday.
I hope one day there will be a cure.
When I grow up, I want to be a doctor.
Please everyone. Be strong.
I admire you all..
peacedreaming 4 years ago
Peacedreaming, I am sorry to hear about your sister and it is very hard when it comes to family because its like your losing something you always had and always thought you would have when you get older. I got one of those cookie things from a Asian places today and this is what the paper said and I hope it comes true to all of us. "Focus on the color purple this week to bring you luck". Well most of us know Purple is the CF color of awareness and I am staying positive.
rugby85 4 years ago
for sure bro. always stay positive. thank you sooooooo much for that. it means so much to me. he was one of my best friends. i never experienced such a down time in my life. the most sad ive been in awhile. still grieving. it sux. this is the closest person ive lost. thanks again man and stay strong
blisteringcold1 4 years ago
anytime and that is what I am here for is to keep the up beat still in the blood flow. Take care brother. Prayers are with you and your family and friends at this time of grieving this loss.
rugby85 4 years ago
fucking sad. I just lost my friend this week to cystic fibrosis. Lets all pray and hope to god that there will be a cure soon.
blisteringcold1 4 years ago
I am sorry to hear about your friend blisteringcold1 it is very hard on a person and I have lost a friend to CF just coming on 3 years this year and I am already freaked because I got lots of friends that have it and I hope they do find a cure with it.
rugby85 4 years ago
My name is Maria, and I got CF. I'm lucky, beside my daily treatment, I live a perfectly normal life. I'm not often sick, and thank God for that. Help us find a cure. Please.
Maaria91 4 years ago
Thanks for the post Maria for the post. Its nice to see the ones with CF talking to others about it. Have a great day. A cure will come within time and God will provide one soon we pray.
rugby85 4 years ago
i hope there is a cure soon xxx
lors2006 4 years ago