No Answers, No Cure: Cystic Fibrosis
“This is Stephen… Stephen has Cystic Fibrosis…” The first of a series of short documentaries whose purpose is to raise awarness and activism for the cure of genetic disease. GET INVOLVED!!! JOIN THE FIGHT!!! Now more then ever, little people have the tools and the power to initiate GREAT SOCIAL CHANGE!!! I receive many letters everyday from regular people just like you asking me what it is they can do to help The Fight. If you want to help, it takes nothing more than five minutes of your time. Simply copy/paste the following into the message box in the share video screen: An amazing documentary that really needs your help… Please Rate, Comment, Favorite and Forward! If you can send that message with the video attached to as many people as possible, even if it is only your friends list, you would be helping every man, woman and child who has to suffer with genetic disease tremendously. I am but one person and due to YouTube communication restrictions – I can only do so much. WE need YOUR help!!! Perhaps together we can accomplish more than just having a video posted on the front page… God Bless
Tagged with: Copy Paste • Genetic Disease • Page God
Filed under: Cystic Fibrosis
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As a cystic fibrosis researcher and computational scientist, I must say that the actual reasons CF has not been cured yet run deeper than one might expect. We have all the data we need, we just cannot compute systems with this much complexity, yet. For a good intro why CF, and other genetic diseases have not been cured, visit my channel. God bless.
I agree with the kid that we need a cure. What we really need right now, though is : MEDICINE THAT’S FREAKIN AFFORDABLE ! Over $3,000 for medicine that we need just to stay alive is RIDICULOUS!
Not to mention help finding/getting jobs that we’d be able to do , and the rules for SSI changed so we can afford living on our own rather than having to choose being stuck with family or living in a cardboard box. (I’d LOVE to be able to afford getting off SSI…but it’s like a trap! )
@wasupitswill hey whats up Im Jess I have CFRD too i tried all the pills and i always wound back up on jus plain insulin but i do recommend the insulin pump its so awesome.u get stuck once every 3-4 days and you cant feel the burn of the insulin either.emaiil me if you wanna kno more or want someone to talk to.Good Luck
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
things can get ugly with private insurance… if you work for a pirvate company.
I have CF. I live in Quebec, Canada. There is no fees and all is 100% free.
In many other countries, 100% coverage is not so unheard of. This man was born with this disease, he shouldnt inherit financial problems as well. I’d be more than happy to pay more taxes if this guy woudlnt have to pay for any of his treatments/medications out of pocket. Why should he?
I’m an American living in Germany. Here, no one would even ask how much the treatment costs. Here, you have complete coverage and there’s no or very minimal copay.
I may pay more taxes but I’m more than happy to if it means I’d help someone like this young man live a more normal life. He’s got enough problems to worry about, money shouldn’t be one of them.
I hope that advancements and common sense in the medical and scientific communities merge as one to realize that there is a market for ‘treatments’, not as much as cures. Cures should be the priority.
How the hell would some of those “doctors” feel if they were suffering from something terrible like CF?
Cure the disease.
JMMPR24 no matter what I am sure that CF is a living hell to live with. For the past few weeks I experienced some post nasal drip where there is mucus stuck in the back of my throat and I have to cough so much (and so hard) that I feel that I would cough up a lung. sticky stuff man. Drives me NUTS and have to take medication to loosen it.
ekateri28, there actually ARE some medications that we CF people use to losen up the mucus. But sometimes even all the meds and exercise doesn’t do much. (depends on how severe the CF is. )
My cousins little girl has Cystic Fibrosis and now Diabetes. We are very, very close. I feel so lucky that my little girl is healthy. I missed Jodies Birthday yesterday and feel very sad for what has happened re my efforts. All I can say is I am glad I am not rich! People are more important than money!
Hey, I am a 21 year old with cf. I know it can get overwhelming, so many little things constantly tacked on, weighing you down and making easy tasks that much harder. But just stay focused, don’t let the little things bring you down, but don’t ignore either. Take your life one day at a time, things will get better. I hope i helped motivate you a little, best of luck to you
- Joe
I’m 12 and have Cystic Fibrosis. Diagnosed at 7. It *****! The people who don’t have are lucky! It screws up your life! You get up each morning, take a million pills, breathing treatment, flutter, vest, mirilax then if you want breakfast theres 6 more pills to take. Every time i eat, thats 6 more pills. It makes life soooo hard and overwhelming, espeically for a middle schooler. Then my therapist gives me stupid pills to help, i think they make me angrier,nothing makes sense. We need a cure.
I support Stem Cell research 100% and I hope you will learn to support it too.
I don’t much like your editing – too jumpy, and you can’t hear what they’re saying when the nebuliser starts. But the information you present is good. Gives you a lot to think about. Overall, not a bad vid. Join the crusade!
Google: Lung Transplant Bradenton, and you’ll find an inspiring story about a CFer who had a double lung transplant.
GoTimothy your talking crap!
In prison for greed.
same here, it’s a pain to freakin go work in an office where i can’t cough or else i get nasty looks and discrimination, they want me out because our health insurance boosted the day i came in. It’s a killer, i have to freakin cough insanely 2 hours a day and do treatements and all my friends dont fukin care they say stupid **** like ‘it will pass’… I can’t get near girls cuz they all think ill get them sick, nyways i dont want them to have to deal me spitting muccus all the fuckin time.. :’(
Well, in United States, that’s a whole other story…
Wow, you are ignorant. He does have insurance. Most people who have insurance still have a lot of costs associated with the disease. Almost nobody has health insurance that covers 100 percent of everything. If you do, good for you, but how about some sympathy for the other sufferers of this disease who aren’t so fortunate. I don’t even have CF and I certainly have sympathy for them.
Just saw you on another response, you really need to educate yourself with this disease. I am 43 and have lived in different homes, some with mold some without. I was told that I was allergic to mold, which yes it is a “trigger” it is not the cause. It is caused by an abnormal gene or two. I have two of the abnormal genes.
hope u r seeing a speciaist and not a GP…
keep up the treatmetns dude and try to inspire uyrself cos u cant rely on others to motivate u…i have cf aged 42