I met a girl recently I'm absolutely crazy about that has CF, I just wanted to hug her and cry hearing about what she goes through daily... She gives me so much hell pushing me away but I know its because she cares for me and I always try to keep at it learning more about CF and keeping her motivated. I'm so proud of her and fascinated by who she is and her life. Always be respectful to others and grateful for you life.
My niece was diagnosed when she was just a few months old. She had a double lung transplant at 14 and had a good 2 years before her body started rejecting the new lungs and she passed away at 17. I admire your determination and strength. Carry on the fight...
@@shannonmeek2436 people staying new donor lungs will get damage like their old lungs over time is that turth or not then is turth they can get damaged too like old lungs I dont understand that why people staying it then like Stephi Lee stay new lungs will get damage like old lungs and I see video on RUclips call I need to breath sisters call Nikki and kristie narrator stay new lungs will get infected over time with cf again what do people believe is turth or not I Google it transplanted lungs will not have CF and will never develop it, I dont believe it turth or what let me know Thankyou for your time from jess sellars xxxxxx
@@Jess-wk5jo CF is a genetic condition so new lungs can buy time with the strong likelihood of a longer life but we cant cure CF, its part of their DNA.
Covid is like 10 times worse because our lungs are already bad then if we get covid that means we have 2 lung diseases and we are so much less likely to live and in public we cough so during covid everbody stares at you pretty much the whole time and we need to wear masks all the time and no mask breaks unless we are outside away from everbody or we are vaccinated and i know because i hve CF.
How is Molly doing now? It sounds like she is amazing and an example of what a positive outlook can give! Molly, I hope you are well and going strong. You go, Girl!!
I have CF so i can say that it is very hard to have CF and see others having a normal childhood and having to explain CF to the class when you cough. And because nobody really knew about CF me and dad would take my compression machine for show and tell on the 1st or 2nd day of school and explain CF to them.
Wow truly wish her all the best my physical health is somewhat okay. Ive have significant skin problems and eye issues and vision deterioration not going to lie i whine/complain a-lot about the hand i been dealt, its very hard to maintain a positive spirit and attitude. She truly is a happy positive soul truly wish her all the best
Well done Molly :) You are such a beautiful, brave and smart girl. You deserve all the happiness in your life. Thank you for sharing your video. Wishing you all the best :)
Am getting tested for cystic fibrosis June 26/19 am 31 male and I hope my current lung doctor is wrong I know I have only 49% lung function and I have weight gain blood pressure problems and blood glucose leaves are saying am pre-diabetic and a ultrasound showed I have a fatty liver as well so I hope my tests come back navgtive for cystic fibrosis
While cf might be terrifying I hope you don’t worry about it too much it’s better to get a firm diagnosis with the proper meds than a wrong diagnosis and poison I found out I had CF after a moving to England after years of the wrong medicine which the doctor said made things worse since you went so long without finding out I hope that you have a mild case of CF as well...
I'm am one who was told I Asthma but chronic infections resistance to medications and just not making progress in my health. Is forcing me to look in a differnt direction.
I read the comments and see people claiming to have been diagnosed around 15, 20, 30, 35, 40 years old. I don't understand how people can be diagnosed so late. Don't you have a screening system in the US? I am from France and here we have newborn screening : when a baby is born, doctors take drops of blood from him/her on his/her 3rd day of life. These drops of blood are then analyzed and from them, 5 genetic diseases are sought including cystic fibrosis. So the parents are aware from the first or second week of their child's life. But I imagine it is different from a country to another.
Completely agree. I've not long found out I'm a carrier of the CF gene so have been looking into it and it seems remarkable that people survive so long without diagnosis.
I was diagnosed with CF at 38 and it’s been 14 years for me. I’m a patient of St. Michael’s Hospital in Toronto, Ontario, Canada where Dr. Elizabeth Tullis is the hands on Physician/Director in charge. I am unfortunately or fortunately (however you want to look at it) one of less than 5 black (Afro Caribbean) patients. I inhale 7% hypertonic saline solution up until the past month or so Tobramycin, but they’ve since stopped that because I’ve developed tinnitus in my left ear. I’ve now been approved for Trikafta so I’ll be underground a sweat test and a CT scan in the next two weeks before I start those meds. Exciting times. Just a quick question, what mask have you found effective?
I have cystic fibrosis too and most of the medications that you were listing are the almost the same medications I have to do too. I was diagnosed with CF as a newborn. I am 13 now and it’s hard I’m in the hospital all the time. I have to take my albuterol, hypertonic saline, then I do my vest, following with my vest, Toby pod inhaler. I take a lot of pills too. I’m sorry if my spelling is a little off There’s a lot of medications I have to take and it gets a little hard to pronounce them. I think the most effective mask for me is the one that straps onto your face so you have to breath the Medicine in. I’m sorry you had to go through that and I hope you have a great life.
@@marthayamm1145 omg you are a warrior life is not fair. bad people don't deserve to live in this planet but unfortunate they live until they get old. And the good people like you deserve to live a nice life but you always struggle to survive life is not fair I'm with you.❤❤
I have been struggling with my condition Primary Ciliary Dyskinesia. Is there anything that can help thin down the abnormally sticky thick mucus which is causing me breathing difficulties. Living in the UK with this rare condition is tough, as there is limited support and knowledge. I have tryed out hypertonic saline, Ventolin nebs, and take daily carbocisteine to thin mucus down. If any one can recommend something i can try, i would highly appreciate it. Thank you.
They are working on a cure and CF is caused by defective DNA and they have un-mutated DNA before in a different disease so the cure is kinda close actually and i hope it will be made before i get a lung transplant because i have CF and lung transplants are extremely expensive
Can someone explain me this.They diagnosed me with cf when i was 4 years.Im 15 now my lungs function are like 100-90 rly good,never had bacteria never coughs didnt get sick for 3 4 years.i only take creons btw i dont go usually to restroom im rly tall like 190 no problem with growth spurut and i train football for 9 years.can someone explain how did they diagonse me i feel fantastic...??btw only problem is i cant get rly fat im like 60kg but i dont eat much..
send help its worse then in ffa for my fsmily :/ my lil bro is 9 and at a few months was on life support, at 8 had part of his lung removed, spends half his life in hospital
Por favor nao fique triste ou assustada , tenha calma . Meu filho tem 11 anos ele esta bem faz atividade como todos outros garotos , cada cistic Fibrosis tem sua historia a mutacao de meu filho e F508 mas ele esta otimo , mas desde diagnostico eu fiz e faço de tudo pra que ele esteja bem . Quando bebe meu irmao ajudou reformando o quarto dele pra garantir que nao houvesse mofo, ele espirrava se alguem tivesse perfume eu pedia por favor nao usem, eu pedi ao medico uma carta explicando a saude de meu filho , e mostrei aos vizinhos de pequena distancia ou grande pra que nao fizessem queimada nos lotes pois isso poderia levar meu filho ao oxigenio no hospital, faça tudo pelo seu bebe vc tera otimos resultados ,Deus abençoe voces sou a mamae do Davi .
@@c.v6735 Please do not be sad or scared, calm down. My son is 11 years old he is good is activity like all other kids, each Cystic Fibrosis has its history the mutation of my son and F508 but he's fine, but since diagnosis I did and do everything so that he is well. When you drink my brother helped renovating his room to make sure not had mold, he sneezed if someone had scent I asked please use no, I asked the doctor a letter explaining my son's health, and showed the short distance from neighbors or big for that did not burn in the lots as this could take my son to the oxygen in the hospital, do everything for your baby u will have good results, God bless you guys'm the Mommy of David.
It's not only a lung disease, Cystic Fibrosis affects the reproductive system, lungs and pancreas. You should probably get that checked out, but Cystic Fibrosis is a genetic disease so I doubt you'd have it.
There are so many different mutations of cf, some have it worse than others. Some people live with cf and don't even know it because the symptoms are so mild. There are also slow progressive cf, you could be born with it but only get sick later in life. It's very different for everyone
she is FLAWLESS. I am a nurse and have some patiets with CF, there are also cases of a mild form of CF, those mild forms are not live threatening but nevertheless it sucks!!!
I think she means most kids. Yes some kids like you might know what it is. But many people like me for example don't even hear of what CF is until they're well into their 20's or older.
she is an angel. she is so positive, at least she looks like it, and it gives me chills.
Currently 32 and going strong, Staying positive is essential with CF. Keep up the good work, As people have said exercise really helps!
Chris VS Cystic Fibrosis what insurance do you have ? I have cf too
Keep at it, I'm proud of you. There's people that love you and want you to have a quality life :)
My sister passed away from CF when she was 19. This is extremely hard to watch but I wanted to educate myself.
I’m sorry what happened.
RIP ur sister
@@blondieclown it’s genetic she was born with it and didn’t get a lung transplant
@@mohamedhashim3081 thank you
@@staciemae im sorry my younger sibling has cystic fibrosis and was on my account. sorry for the loss, i deal with it myself. i hope you're doing well
poor baby, such a beautiful girl, so heartbreaking
I met a girl recently I'm absolutely crazy about that has CF, I just wanted to hug her and cry hearing about what she goes through daily...
She gives me so much hell pushing me away but I know its because she cares for me and I always try to keep at it learning more about CF and keeping her motivated.
I'm so proud of her and fascinated by who she is and her life.
Always be respectful to others and grateful for you life.
Be encouraged hon. I'm 62 years old with cf. I was just diagnosed this year. Keep a good exercise routine! It really helps:-)
camelia markham I dont think so.
camelia markham ummm I have cystic fibrosis and you have to be born with it and you should have been known about it🙄🤔
That Girl Reacts you know there are slower cases of cf right? You can go your whole life with a really mild case and not know.
@TA A I'm just basing it off people being diagnosed very late. I dont know too much about the illness myself
camelia markham what insurance do you have ?
My niece was diagnosed when she was just a few months old. She had a double lung transplant at 14 and had a good 2 years before her body started rejecting the new lungs and she passed away at 17. I admire your determination and strength. Carry on the fight...
I'm sorry 🥺❤️
@@shannonmeek2436 people staying new donor lungs will get damage like their old lungs over time is that turth or not then is turth they can get damaged too like old lungs I dont understand that why people staying it then like Stephi Lee stay new lungs will get damage like old lungs and I see video on RUclips call I need to breath sisters call Nikki and kristie narrator stay new lungs will get infected over time with cf again what do people believe is turth or not I Google it transplanted lungs will not have CF and will never develop it, I dont believe it turth or what let me know Thankyou for your time from jess sellars xxxxxx
@@Jess-wk5jo CF is a genetic condition so new lungs can buy time with the strong likelihood of a longer life but we cant cure CF, its part of their DNA.
@Tgon Mwort What are you talking about?
Molly, your grace and determination have helped me persevere today. You are inspiring.
i wonder how are these patients doing during covid. i hope they are doing all well...
Covid is like 10 times worse because our lungs are already bad then if we get covid that means we have 2 lung diseases and we are so much less likely to live and in public we cough so during covid everbody stares at you pretty much the whole time and we need to wear masks all the time and no mask breaks unless we are outside away from everbody or we are vaccinated and i know because i hve CF.
How is Molly doing now? It sounds like she is amazing and an example of what a positive outlook can give! Molly, I hope you are well and going strong. You go, Girl!!
I came here after watching 5feet apart for the 2nd time and it’s just 🤯 to actually see a real person with CF instead of actors it is just OH WOW
I watched it 5 hours first time,very interesting and sad
me too :)
Her positive attitude brings me joy
She's so positive.. God bless her♥️🙏
I have CF so i can say that it is very hard to have CF and see others having a normal childhood and having to explain CF to the class when you cough. And because nobody really knew about CF me and dad would take my compression machine for show and tell on the 1st or 2nd day of school and explain CF to them.
Hats off to this brave lady
I hope this beautiful angel is still with us, god bless her and you all - life is precious
Such a brave person
Wow truly wish her all the best my physical health is somewhat okay. Ive have significant skin problems and eye issues and vision deterioration not going to lie i whine/complain a-lot about the hand i been dealt, its very hard to maintain a positive spirit and attitude. She truly is a happy positive soul truly wish her all the best
Well done Molly :) You are such a beautiful, brave and smart girl. You deserve all the happiness in your life. Thank you for sharing your video. Wishing you all the best :)
Molly Pam's story is an inspiring one. She is truly a fighter who is striving to live strong! What a beautiful story. 💜💜💜
God bless you molly
Stay Strong Molly!
thank god she still alive i reached out to her on insta
I can't cry but want to
Am getting tested for cystic fibrosis June 26/19 am 31 male and I hope my current lung doctor is wrong I know I have only 49% lung function and I have weight gain blood pressure problems and blood glucose leaves are saying am pre-diabetic and a ultrasound showed I have a fatty liver as well so I hope my tests come back navgtive for cystic fibrosis
Darrin's Channel How did it go?
While cf might be terrifying I hope you don’t worry about it too much it’s better to get a firm diagnosis with the proper meds than a wrong diagnosis and poison I found out I had CF after a moving to England after years of the wrong medicine which the doctor said made things worse since you went so long without finding out I hope that you have a mild case of CF as well...
1 year on I think Darren is gone.. rip mate
Does anyone have any update on how she’s doing now?
thx for the info
More power to you girl❤️❤️❤️
here me one of the cfer and I can completely understand this🤞💔
how are you in your treatment?
@@Momo-bb2fn Won't say good but okay..
@@sumaiyashahid5532 well at least okay is alive, wish you the best
Just found this video again, how have you been how are things going?
@@Momo-bb2fn hmm things are okay!
I'm am one who was told I Asthma but chronic infections resistance to medications and just not making progress in my health. Is forcing me to look in a differnt direction.
I read the comments and see people claiming to have been diagnosed around 15, 20, 30, 35, 40 years old. I don't understand how people can be diagnosed so late.
Don't you have a screening system in the US? I am from France and here we have newborn screening : when a baby is born, doctors take drops of blood from him/her on his/her 3rd day of life. These drops of blood are then analyzed and from them, 5 genetic diseases are sought including cystic fibrosis. So the parents are aware from the first or second week of their child's life. But I imagine it is different from a country to another.
Completely agree. I've not long found out I'm a carrier of the CF gene so have been looking into it and it seems remarkable that people survive so long without diagnosis.
There is, in fact most cases are diagnosed at prenatal care, even during pregnancy. But I’m assuming they are exceptions. Such as in this case.
What are we supposed to do for the nausea
how is she doing now?
how's she right now?
How’s she now?
I wonder where she is now
I was diagnosed with CF at 38 and it’s been 14 years for me. I’m a patient of St. Michael’s Hospital in Toronto, Ontario, Canada where Dr. Elizabeth Tullis is the hands on Physician/Director in charge. I am unfortunately or fortunately (however you want to look at it) one of less than 5 black (Afro Caribbean) patients.
I inhale 7% hypertonic saline solution up until the past month or so Tobramycin, but they’ve since stopped that because I’ve developed tinnitus in my left ear. I’ve now been approved for Trikafta so I’ll be underground a sweat test and a CT scan in the next two weeks before I start those meds. Exciting times. Just a quick question, what mask have you found effective?
I have cystic fibrosis too and most of the medications that you were listing are the almost the same medications I have to do too. I was diagnosed with CF as a newborn. I am 13 now and it’s hard I’m in the hospital all the time. I have to take my albuterol, hypertonic saline, then I do my vest, following with my vest, Toby pod inhaler. I take a lot of pills too. I’m sorry if my spelling is a little off There’s a lot of medications I have to take and it gets a little hard to pronounce them. I think the most effective mask for me is the one that straps onto your face so you have to breath the Medicine in. I’m sorry you had to go through that and I hope you have a great life.
@@marthayamm1145 omg you are a warrior life is not fair. bad people don't deserve to live in this planet but unfortunate they live until they get old.
And the good people like you deserve to live a nice life but you always struggle to survive life is not fair I'm with you.❤❤
Molly's doctor is soooooooooo CUTE!
So true omg
Molly herself is sooooo cute
😳🤯 whattttttt
God bless
I was diagnosed at 12, no issues or symptoms as a baby, infant or early child. How can that be in some of us ?
@Tgon Mwort How do you know?
I have been struggling with my condition Primary Ciliary Dyskinesia. Is there anything that can help thin down the abnormally sticky thick mucus which is causing me breathing difficulties. Living in the UK with this rare condition is tough, as there is limited support and knowledge. I have tryed out hypertonic saline, Ventolin nebs, and take daily carbocisteine to thin mucus down.
If any one can recommend something i can try, i would highly appreciate it. Thank you.
I have CF and water helps alot actually but only for some people but that is the only thing i know can thin mucus
Ivwonder hownis shebdoing now?
I hate it ever get mucus so stuck in your nose or lungs and cant get it out?
i have the same nebuliser
So do i.
I hope they make a cure
They are working on a cure and CF is caused by defective DNA and they have un-mutated DNA before in a different disease so the cure is kinda close actually and i hope it will be made before i get a lung transplant because i have CF and lung transplants are extremely expensive
Can someone explain me this.They diagnosed me with cf when i was 4 years.Im 15 now my lungs function are like 100-90 rly good,never had bacteria never coughs didnt get sick for 3 4 years.i only take creons btw i dont go usually to restroom im rly tall like 190 no problem with growth spurut and i train football for 9 years.can someone explain how did they diagonse me i feel fantastic...??btw only problem is i cant get rly fat im like 60kg but i dont eat much..
It could be that your CF isn't extreme at all so you barly have CF but you still do but that is extremely rare
@@gumballking87844 yup im diagonsed with atypical CF or mild cf ;d
She had no symptoms before age 10? Crazy.
Five Feet Apart
Dhan Flores i came to see how real people deal with it
Armand Diaz It’s honestly not as bad as they portray it to be, but it does depend on the type of cf you have. Me for example, I’m doing fine.
send help its worse then in ffa for my fsmily :/ my lil bro is 9 and at a few months was on life support, at 8 had part of his lung removed, spends half his life in hospital
My little girl is 4weeks old tomorrow and she been diagnosed with c.f I'm so scared and sad for her
Por favor nao fique triste ou assustada , tenha calma . Meu filho tem 11 anos ele esta bem faz atividade como todos outros garotos , cada cistic Fibrosis tem sua historia a mutacao de meu filho e F508 mas ele esta otimo , mas desde diagnostico eu fiz e faço de tudo pra que ele esteja bem . Quando bebe meu irmao ajudou reformando o quarto dele pra garantir que nao houvesse mofo, ele espirrava se alguem tivesse perfume eu pedia por favor nao usem, eu pedi ao medico uma carta explicando a saude de meu filho , e mostrei aos vizinhos de pequena distancia ou grande pra que nao fizessem queimada nos lotes pois isso poderia levar meu filho ao oxigenio no hospital, faça tudo pelo seu bebe vc tera otimos resultados ,Deus abençoe voces sou a mamae do Davi .
@@daviminicheffpimenta1737 English please sorry
@@c.v6735 Please do not be sad or scared, calm down. My son is 11 years old he is good is activity like all other kids, each Cystic Fibrosis has its history the mutation of my son and F508 but he's fine, but since diagnosis I did and do everything so that he is well. When you drink my brother helped renovating his room to make sure not had mold, he sneezed if someone had scent I asked please use no, I asked the doctor a letter explaining my son's health, and showed the short distance from neighbors or big for that did not burn in the lots as this could take my son to the oxygen in the hospital, do everything for your baby u will have good results, God bless you guys'm the Mommy of David.
Bless you thanks for your kind words 🙏 ❤
I hope I don’t have it I’ve been coughing up mucus for like a month and my uncle has a mild case causing him to be infertile.
It's not only a lung disease, Cystic Fibrosis affects the reproductive system, lungs and pancreas. You should probably get that checked out, but Cystic Fibrosis is a genetic disease so I doubt you'd have it.
Ya you wouldn’t have it I have cystic fibrosis and it’s not just the lungs it’s everything but I can’t afford most of the treatment so it really sucks
@@ryleenovak3290 Have you tried doing a GoFundMe ?
I have cf
Sophia Sager what insurance do you have right now ?
Wtf. Why are people diagnosed so late??? I was diagnosed when I was 5 months old! Lucky...
There are so many different mutations of cf, some have it worse than others. Some people live with cf and don't even know it because the symptoms are so mild. There are also slow progressive cf, you could be born with it but only get sick later in life. It's very different for everyone
I had a misdiagnosis in my mid 20's, then told 2 years ago at 50.☹️
@@kevinnash7821 I'm guessing it was late progressive if your in your 50s though!
@@timotheechalametismyhusban200 wasn't bad as a youngster, but knew in my 20's there was something not quite right.
My daughter was born in 2001 with a bowel blockage another blockage at 5 months old not diagnosed until she was 8.5 years old she’s nearly 21 now
coming here after seeing the kid from tiktok speaking abt his prob
my mom a=has CF
Am 10 and I know what for but that is Because i each 5 feet apart
:/
I have it I wear that machine
Cute and strong is a thing.
Sonography said ...no evidence of bowel thickening ..may intestine be affected with CF ....having symptoms of CF .
Milestones were normal and immunization was complete..Read from
Keeper
she is FLAWLESS. I am a nurse and have some patiets with CF, there are also cases of a mild form of CF, those mild forms are not live threatening but nevertheless it sucks!!!
I have CF and it really does suck, alot
I just watched five feet apart and I thought they had t wear that Oxygen thing most of the time
Diagnosed at 10 yrs old? That's add!
Ha. Diagnosed last year when I was 18. It was a shock to the doctors though.
I was diagnosed at. 9
I was diagnosed at 3 months, and I know a girl who was diagnosed at 3 days. 🇫🇷
Mhm! It also depends on the type of cf you have.
I have most of the types I think, and I was diagnosed at a few days old.
fishing
Go
wow. im glad i dont have this
I am 10 I was born with it
I also
I've also been diagnosed, 9 and a half years old.
molly is wrong i know what cf is and i am not even a teen
I think she means most kids. Yes some kids like you might know what it is. But many people like me for example don't even hear of what CF is until they're well into their 20's or older.
That's cool. You are a smart young lady!
Me too I’m nine btw no hate
Glad I dont have this