My name is Glady, I'm a 31 yr old girl with CF...I've had my share of probs w/the disease...what I've learned is you have to enjoy the good days when they come, and HANG IN THERE through the bad times, for they dooooo pass!!! Though my health isn't the greatest, I've managed to get used to being ill and live as normal as I can, which is all a person can do with CF. Some advice...DO YOUR PHYSIO!!! At my age I've realized I could have been better longer had I done it more often when younger!!!
i have cf and my cf is acute and i am going on the transplant list and i have heart problems and dibeates and stomach problems so it hard i just dont know how hard it is for my mom and brothers
if it is a fatal disease then maybe parents who are both carriers should think about other ways to have babies (sperm or egg donor)? Why doom children if you know you are carrying the problem gene??
If you dont know what you are talking about then dont say anything at all most people dont know they are carring the cf gene i didnt Robert was my fourth child who passed away jan 2nd 09 at 21 and he lived every day the way he wanted to and did everything he could in his short life and he would never of wanted it any other way he was my hero i miss you baby
You should be ashamed of yourself. Our daughter was our first born, there is no way to know if you are carrier before pregnancy. We were not aware we were carriers until our daughter was 2 1/2 years old. Parents who find out they are carriers then have to make the difficult decision on whether or not to have more children and how to do so.
but if both parents know they are carriers shouldn't they think deep about their decision to have a baby?? by the way im a kid myself and just asking questions.
ardent, people who are carriers do not have any symptoms. So, unless you have had your genome sequenced or tested specifically for genetic defects (something that is still very expensive and not readily available at the moment, and so imagine 10 years ago people had no access whatsoever to test for CF). And then because there are over 1500 different genetic mutations (although most are incredibly rare), you need to find two people with and identical genetic mutation to have a child with CF.
a lot of people do not go for genetic counseling before they get married. they normally just go to the priest for counseling if they're catholic. then again you're a child so yes it's good to ask questions like this because one day you will get married and have kids yourself and now you would know what to do.
A type of new treatment was discovered this February! A sort of emulsion was developped that supposedly can break through the mucus, and attack the common lung infections which result in the majority of deaths in CF patients!
Hi.My best friend has just died aged 14 yrs of age.He spent 9 months a yr in hospital since he was 2.He needed a heart and a lung transplant.If anyone here is living in ireland please fundraise or give money 2 help build a foundation in ireland there is not 1.the population is so small that there is not many matches.Please help and donate or fundraise. thankyou. great video. God bless everyone with cf!
The CCFF did agreat job with this info video.I had a daughter Sarah with CF who passed away in July 2006. Sarah had just turned 20 6 weeks before. I miss my girl dearly,she was my only child. To help I now do the Great Strides walk Sarah began in 2005 in memory of her best friend Rachel who had CF too. A few of us got a team together,we call it "Angels of Hope".Each year I'm walking in memory of those we have lost to CF. Lets all pitch in & make CF stand for Cure Found!
just pray that is found a cure very soon,so that way,CF won,t take those we love so much,my heart is with you all,never give up fighting,never loose hope please,even if some days you don,t have the strenght to do it,god bless you all,and a big thanks to this foundations and volunteers who help and do everything they can...good bless
i found out about this desease,about one year ago,when a singer that i admire a lot pass away from it,he was 23 years old,i start to learn more about CF,i don,t have it,but my heart is with everyone who does,i
hi! im gunna do a fundraiser in my town! i really wanna help out and find a cure, i dont have cf but my brother did he died a year and a half ago, thanks for posting the video
one of my bestfriends has CF. she always has to miss special ocasions and hang outs cause of it. though she still lives a normal life, it sometime really affects her :'(
Wow..after looking at this video, I was surprised at how many people have CF. I was browsing through YouTube because I was studying for a Science test about Cystic Fibrosis. Even though I dont have CF, I am really touched at how much confidence the people have. I hope that IF I do have CF, i would be the same.
by little cousin shes only 4 she has CF and im so saddened by the fact that she has to do all of this stuff to be a normal child and shes so smart and full of life. i pray all the time that they will find a cure in her life time
I'm 26 with CF living here in Canada. Yes, CF is eventually fatal, but we cystics gotta put more effort into maintaining good health so we'll be alive when the cure comes! My secret formula: Early bedtimes, lots of good healthy food, physio, daily exercise and taking all the pills your doc says you have to!! Hope this helps someone!
my little sister has cystic fibrosis shes eleven , shes curretly in the hostpital i am 14 i am scared for her , i dont understand her condititon something in my mind wont fathom it i feel so far away from her im supposed to be her best friend, and i cant imagine life with out her, i was in church today and i started to cry , im scared i feel so small next to her, arent i supposed to be the strong one?
I really hope she's okay. I have CF and am also 14. It's hard to eplain what it is, but know that your sister is a very special little girl. I reach my heart to you and your family and wish you all a safe journey.
Thanks for sharing this with us. I'm in the UK and things are similar here. I certainly recognised some of the equipment that was used in the film.
Thought I'd share a film I made with people who have helped me since I was 16 to overcome the problems I've had over the years. More is to be done, and one day I hope to use the film to raise awareness even more about CF and also help raise funds to search for a cure.
This is a great CF awareness video. Dr. Tullis was my son's Dr. before he passed from this horrible disease in May of 2005. I am so very grateful to Dr. Tullis for the care she gave my son over the years. This video is so much more informative than others that have been done before.
En 1997 una chica llamada lauren, estaba caminando en un bosque,despues desaparecio de repente nunca nadie la encontro hasta el 2000 cuando otra chica llama Mary encontro su cuerpo y unas marcas en su pecho decian: no era lo suficiente hermosa" y ahora que haz leido esto ella aparecera en tu espejo diciendo que no eres lo suficientemente hermoso y te matara!(por cierto la chica llamada Mary murio poco despues)Para poder salvarte pega esto en otros 5 videos.ESTO ES CIERTO
Excellent video for those who know nothing about cf. I have cf, im 24 now and have a good life, its hard at times but medicine today is getting better. Lets hope for that cure and ty to all those who raise funds for the cf trust:)
My ex-girlfriend/best friend has cystic fibrosis. I don't think she has much time left... her pft's are down to 11% and won't go back up. Thank you for posting this video.
Cystic Fibrosis has been a part of my life for a year now...I gave birth to my now 1 year old son Day'Shawn. Before I had him I never even heard of CF, now those 2 words will never leave my mind! I pray everyday that he'll be able to say good bye to me and not me say good bye to him! I fully understand where the mother in this video is coming from when she says she doesnt want to live with the what if's! I think this video is excellent on given the info needed to know about CF.
I really got alot of Info on watching this video, i think in no time we will find a cure, and no child or person should live though this, exspecial a child,
I know it may start on a "harsh" note but the sad reality is that this is a fatal disease.
I'm fortunate enough to not have CF but I've been actively involved since 1983 (the year the Quebec Chapter was started) why? Because I believe that its only through research, public awareness and more importantly raising funds for research so don't be shy, get involved!! :)
It's a very interesting video; especially for people who don't know what CF is, I think.
But why start with saying that it's a fatal disease? I would rather see that somewhere in the middle; but I'm not in a good position to be objectif...
It's a bit emotional too, but that has to be, perhaps, to move people that are not emotionlly involved.
This is an excellent video to educate the public on just what CF is, and what the CCFF does to facilitate the funding and research that has brought us so close to a cure. The government spends little or nothing on research. I am a CF'er turning 47 next month, thanks to the CCFF and the dollars and time Joe and Jane Public donate to the Foundation. A CURE CAN BE FOUND IN MY LIFETIME! We need to continue to raise money for the research to be funded.
My name is Glady, I'm a 31 yr old girl with CF...I've had my share of probs w/the disease...what I've learned is you have to enjoy the good days when they come, and HANG IN THERE through the bad times, for they dooooo pass!!! Though my health isn't the greatest, I've managed to get used to being ill and live as normal as I can, which is all a person can do with CF. Some advice...DO YOUR PHYSIO!!! At my age I've realized I could have been better longer had I done it more often when younger!!!
gladfish5 1 year ago
I feel so bad . . .
I wish they could find a cure soon , so they are able to save
many lives of many children & people . Have faith .
JoeCentraI 1 year ago
i have cf and my cf is acute and i am going on the transplant list and i have heart problems and dibeates and stomach problems so it hard i just dont know how hard it is for my mom and brothers
codeblue96 1 year ago
To Ardent94.... maybe your parents should have checked to see if they were carrying the ignorance gene....
K
2gramcracker 2 years ago
Comment removed
KevinBeefBacon 2 years ago
if it is a fatal disease then maybe parents who are both carriers should think about other ways to have babies (sperm or egg donor)? Why doom children if you know you are carrying the problem gene??
ardent94 2 years ago
If you dont know what you are talking about then dont say anything at all most people dont know they are carring the cf gene i didnt Robert was my fourth child who passed away jan 2nd 09 at 21 and he lived every day the way he wanted to and did everything he could in his short life and he would never of wanted it any other way he was my hero i miss you baby
rylanlogistics 2 years ago 4
You should be ashamed of yourself. Our daughter was our first born, there is no way to know if you are carrier before pregnancy. We were not aware we were carriers until our daughter was 2 1/2 years old. Parents who find out they are carriers then have to make the difficult decision on whether or not to have more children and how to do so.
cweger1 2 years ago
but if both parents know they are carriers shouldn't they think deep about their decision to have a baby?? by the way im a kid myself and just asking questions.
ardent94 2 years ago
ardent, people who are carriers do not have any symptoms. So, unless you have had your genome sequenced or tested specifically for genetic defects (something that is still very expensive and not readily available at the moment, and so imagine 10 years ago people had no access whatsoever to test for CF). And then because there are over 1500 different genetic mutations (although most are incredibly rare), you need to find two people with and identical genetic mutation to have a child with CF.
Vaeth13 2 years ago
a lot of people do not go for genetic counseling before they get married. they normally just go to the priest for counseling if they're catholic. then again you're a child so yes it's good to ask questions like this because one day you will get married and have kids yourself and now you would know what to do.
Norb1t9 2 years ago
A type of new treatment was discovered this February! A sort of emulsion was developped that supposedly can break through the mucus, and attack the common lung infections which result in the majority of deaths in CF patients!
SR22Pers 2 years ago
My daughter has CF, this is a very important subject for me. I prey every day for a cure.
54spiritedwill54 3 years ago
Hi.My best friend has just died aged 14 yrs of age.He spent 9 months a yr in hospital since he was 2.He needed a heart and a lung transplant.If anyone here is living in ireland please fundraise or give money 2 help build a foundation in ireland there is not 1.the population is so small that there is not many matches.Please help and donate or fundraise. thankyou. great video. God bless everyone with cf!
xshexyxox 3 years ago 2
The CCFF did agreat job with this info video.I had a daughter Sarah with CF who passed away in July 2006. Sarah had just turned 20 6 weeks before. I miss my girl dearly,she was my only child. To help I now do the Great Strides walk Sarah began in 2005 in memory of her best friend Rachel who had CF too. A few of us got a team together,we call it "Angels of Hope".Each year I'm walking in memory of those we have lost to CF. Lets all pitch in & make CF stand for Cure Found!
SeksiKitty 3 years ago
This has been flagged as spam show
n i had to fuckin watch this at skwl in sceince
GOBBYBITCH2K8 4 years ago
This has been flagged as spam show
wot the fuck wit ur comment on ma pageee
smegg edd
tap bak batty man x
GOBBYBITCH2K8 4 years ago
just pray that is found a cure very soon,so that way,CF won,t take those we love so much,my heart is with you all,never give up fighting,never loose hope please,even if some days you don,t have the strenght to do it,god bless you all,and a big thanks to this foundations and volunteers who help and do everything they can...good bless
teiubesc36 4 years ago
i found out about this desease,about one year ago,when a singer that i admire a lot pass away from it,he was 23 years old,i start to learn more about CF,i don,t have it,but my heart is with everyone who does,i
teiubesc36 4 years ago 2
hi! im gunna do a fundraiser in my town! i really wanna help out and find a cure, i dont have cf but my brother did he died a year and a half ago, thanks for posting the video
missdrpc 4 years ago
one of my bestfriends has CF. she always has to miss special ocasions and hang outs cause of it. though she still lives a normal life, it sometime really affects her :'(
sylvainlarue 4 years ago
Wow..after looking at this video, I was surprised at how many people have CF. I was browsing through YouTube because I was studying for a Science test about Cystic Fibrosis. Even though I dont have CF, I am really touched at how much confidence the people have. I hope that IF I do have CF, i would be the same.
xBlackFallenAngelx 4 years ago
by little cousin shes only 4 she has CF and im so saddened by the fact that she has to do all of this stuff to be a normal child and shes so smart and full of life. i pray all the time that they will find a cure in her life time
Knockwooda 4 years ago 2
I'm 26 with CF living here in Canada. Yes, CF is eventually fatal, but we cystics gotta put more effort into maintaining good health so we'll be alive when the cure comes! My secret formula: Early bedtimes, lots of good healthy food, physio, daily exercise and taking all the pills your doc says you have to!! Hope this helps someone!
TayraD 4 years ago 3
my little sister has cystic fibrosis shes eleven , shes curretly in the hostpital i am 14 i am scared for her , i dont understand her condititon something in my mind wont fathom it i feel so far away from her im supposed to be her best friend, and i cant imagine life with out her, i was in church today and i started to cry , im scared i feel so small next to her, arent i supposed to be the strong one?
butterflychiqx3 4 years ago 7
I really hope she's okay. I have CF and am also 14. It's hard to eplain what it is, but know that your sister is a very special little girl. I reach my heart to you and your family and wish you all a safe journey.
KyoSohmaLuver1106 4 years ago
Thanks for sharing this with us. I'm in the UK and things are similar here. I certainly recognised some of the equipment that was used in the film.
Thought I'd share a film I made with people who have helped me since I was 16 to overcome the problems I've had over the years. More is to be done, and one day I hope to use the film to raise awareness even more about CF and also help raise funds to search for a cure.
mycam79 4 years ago
I have CF... its not fun to have, i take medecin every day and stuff...
Thewar12 4 years ago
My daughter has CF, this is a very important subject for me. I prey every day for a cure.
DeVipressZephoria 4 years ago 4
last week my principles doughter died at age 15 from cystic fibrosis
jerkson07 4 years ago
man i have CF and i hope i dont die from it
subzerototomoney 4 years ago
This is a great CF awareness video. Dr. Tullis was my son's Dr. before he passed from this horrible disease in May of 2005. I am so very grateful to Dr. Tullis for the care she gave my son over the years. This video is so much more informative than others that have been done before.
mattsmom1 4 years ago 2
This has been flagged as spam show
En 1997 una chica llamada lauren, estaba caminando en un bosque,despues desaparecio de repente nunca nadie la encontro hasta el 2000 cuando otra chica llama Mary encontro su cuerpo y unas marcas en su pecho decian: no era lo suficiente hermosa" y ahora que haz leido esto ella aparecera en tu espejo diciendo que no eres lo suficientemente hermoso y te matara!(por cierto la chica llamada Mary murio poco despues)Para poder salvarte pega esto en otros 5 videos.ESTO ES CIERTO
meli574 4 years ago
The best public awerness CF vid iv seen, this vid is spot on 10 out of 10!
ROBBO1978OVBLYTH 4 years ago
Much better video, finally, and "no deflating people" (as someone pointed out about another video). This video explains CF well.
lizzielou73 4 years ago 2
Excellent video for those who know nothing about cf. I have cf, im 24 now and have a good life, its hard at times but medicine today is getting better. Lets hope for that cure and ty to all those who raise funds for the cf trust:)
kevc24 4 years ago
My ex-girlfriend/best friend has cystic fibrosis. I don't think she has much time left... her pft's are down to 11% and won't go back up. Thank you for posting this video.
Goldiney 4 years ago
Cystic Fibrosis has been a part of my life for a year now...I gave birth to my now 1 year old son Day'Shawn. Before I had him I never even heard of CF, now those 2 words will never leave my mind! I pray everyday that he'll be able to say good bye to me and not me say good bye to him! I fully understand where the mother in this video is coming from when she says she doesnt want to live with the what if's! I think this video is excellent on given the info needed to know about CF.
unique902 4 years ago
I really got alot of Info on watching this video, i think in no time we will find a cure, and no child or person should live though this, exspecial a child,
2risky4u 4 years ago
Yannick20,
I know it may start on a "harsh" note but the sad reality is that this is a fatal disease.
I'm fortunate enough to not have CF but I've been actively involved since 1983 (the year the Quebec Chapter was started) why? Because I believe that its only through research, public awareness and more importantly raising funds for research so don't be shy, get involved!! :)
Wolfe222 4 years ago
It's a very interesting video; especially for people who don't know what CF is, I think.
But why start with saying that it's a fatal disease? I would rather see that somewhere in the middle; but I'm not in a good position to be objectif...
It's a bit emotional too, but that has to be, perhaps, to move people that are not emotionlly involved.
Yannick20 4 years ago
This is an excellent video to educate the public on just what CF is, and what the CCFF does to facilitate the funding and research that has brought us so close to a cure. The government spends little or nothing on research. I am a CF'er turning 47 next month, thanks to the CCFF and the dollars and time Joe and Jane Public donate to the Foundation. A CURE CAN BE FOUND IN MY LIFETIME! We need to continue to raise money for the research to be funded.
HarpLover13 4 years ago