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cure b4 2020
- Thread starter ihatecf
- Start date
wanderlost
New member
As long as I can remember the "cure" has been "5-10 years away. " Not to be a pessimist, but I am no longer waiting for anything called a cure, but something to make Cf a (much) longer lifespan - or to where there is no "average lifespan." ( which, as an aside has moved from 18 to 30 in the 28 years I've ben around - so I guess I have two more years to go. LOL I ain't goin' anywhere! <img src="i/expressions/face-icon-small-wink.gif" border="0">
a cure? no.... a better treatment ? yes
In my eyes the only way to "cure" cf is to prevent it . Since it is a faulty gene i cant see how you can cure a "gene" you already have.... but if they find a way to alter that gene before you are born , then i can see how it would be of benefit. I dont look for a cure to be found anymore like i ued to, i look for a way to treat it better and more effectively ( kind of like insulin to a diabetic) .
In my eyes the only way to "cure" cf is to prevent it . Since it is a faulty gene i cant see how you can cure a "gene" you already have.... but if they find a way to alter that gene before you are born , then i can see how it would be of benefit. I dont look for a cure to be found anymore like i ued to, i look for a way to treat it better and more effectively ( kind of like insulin to a diabetic) .
TCNJcystic
New member
I don't think researchers are looking to rewrite your genetic structure to find a cure. What they're looking to do is correct the problem that the gene causes at its root. Literally every medicine we have for cf just attacks the symptoms, and nothing goes to the heart of the problem, which is the improperly folding proteins in cf patient cell structure. So far no medication has attempted to correct this root problem. Correcting this problem would leave one with classifiable cystic fibrosis without a cure, but also without any symptoms at all.
The curcumin surprise from last summer or so was about the idea that it could have at least helped in this correction process.
The thing about medical technology is that it grows exponentially. There's no telling how soon this problem can be corrected.
The curcumin surprise from last summer or so was about the idea that it could have at least helped in this correction process.
The thing about medical technology is that it grows exponentially. There's no telling how soon this problem can be corrected.
princessjdc
New member
That would be nice tho, imagine, the next time you go and see your cf doc. and he tells you that he is going to give you a shot that will cure your disease and you will never have to do treatments ever again. Man wouldnt that be a dream come true. I do believe someday somehow there will be a cure and diffantly better medications.
I honestly think we'll see peace in the Middle East before there's a cure for CF. <img src="i/expressions/face-icon-small-happy.gif" border="0">
My mom always gets upset when I speak realistically about this, but come on! It's A GENETIC disorder with so many mutations that the very idea of finding a cure is pure fantasy. I'm sure many advances will be made to treat Cf, and maybe even specific mutations may be modified, but not in my life time.
My mom always gets upset when I speak realistically about this, but come on! It's A GENETIC disorder with so many mutations that the very idea of finding a cure is pure fantasy. I'm sure many advances will be made to treat Cf, and maybe even specific mutations may be modified, but not in my life time.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>my feelings on it is that they may already have a cure but they aint gonna give it 2 anyone cuz if they did how much money would the drugs stores be losing out on! so thats why i dont think they will ever say they got one. sorry if i upset anyone!<hr></blockquote>
I totally agree. Until scumbag corporate America can look at lives and not a price tag, then we will continue to have pain and suffering in this country.
There is a cure for CF, but there is no cure for the empty pockets it would create.
I totally agree. Until scumbag corporate America can look at lives and not a price tag, then we will continue to have pain and suffering in this country.
There is a cure for CF, but there is no cure for the empty pockets it would create.
This argument makes no sense. Companies very rarely find a cure for anything, when was last time a company cured anything? If a cure happens it will come from an academic research facility and you can bet they will let everyone know they found it because they will want all of that attention brought to the school and their researchers. Drug companies will then be forced to get the cure to the masses. CF is a niche disease, companies don't make that much money off of us. They would probably be able to make just as much money from helping to find a cure.
Jim
Jim
When our children were first diagnosed, we were told that they would never enter public school. As you said the times have changed quite frequently. I think the last I heard it was 33. My son will be 46 November 1st and is still hanging on. Trys to play golf once a week and has a full time job. Don't be surprised if you have many, many more years! Good luck to you and yours.
Bill<img src="i/expressions/face-icon-small-happy.gif" border="0">
Bill<img src="i/expressions/face-icon-small-happy.gif" border="0">
If a research college discovered a cure, do you think some drug companies like say maybe Chiron, Genentech, etc would be making a huge donation to that school to keep the cure under wraps? Probably far fetched, but just an idea. The CF Foundation would be out of business for that matter too. I think that would be a good problem and hope they would too.
As far as the genetic/mutation thing goes it's hard to say. You wonder with the genetic testing that goes on and people knowing they are carriers and choosing not to have CF babies if the cases of CF will decrease in years to come.
As far as the genetic/mutation thing goes it's hard to say. You wonder with the genetic testing that goes on and people knowing they are carriers and choosing not to have CF babies if the cases of CF will decrease in years to come.
Do you think the companies would really go out of business? If a cure is or has been found, what would be the price of getting it. Would it be covered by insurance? If not how much do we pay. What about those without insurance even if it is covered. I believe the cost to obtain the cure would still be out of most peoples reach thus still leaving many CFers still at the mercy of the medical professioin & pharmaceutical companies.
You know I was thinking, I dont think that the scientists would hide the cure if they found it, because think of how much money they would make if they found the cure. That would probably throw all the scientists into retirement to where they would never have to work again, and yet have all this money. Besides, even if they didnt become billioneres, finding the cure, then they would just go and research other diseases, like cancer, dieabetes, hiv, etc...........the list goes on and on, so I think they would still have plenty of work to do even after a cure is found for cf.
Jennifer 24w/cf
Peace, love and joy
(didnt log in)<img src="i/expressions/face-icon-small-cool.gif" border="0">
Jennifer 24w/cf
Peace, love and joy
(didnt log in)<img src="i/expressions/face-icon-small-cool.gif" border="0">
TCNJcystic
New member
I go back and forth on the idea that a cure would be covered up to keep jobs. My feeling is that if a scholastic institution figures it out, nothing will stop them from getting the word around because of the positive pulicity the school would receive. Also, keep in mind that researchers in Britain have been making some huge efforts towards cystic fibrosis research, and I highly feel like the British government is less likely to worry abuot their economy over curing a disese.
15 years? I really, really doubt. As advanced as medicine is becoming, CF itself isn't homogenous enough that a "cure" for it could be easily available.
I can see some aspects of the disease being effectively "cured" by then (or soon after). Improved genetic screening could help ensure healthy kids are born, instead of ill ones. Advances in lung transplants, and overhauls of the donation system, could fix the organ shortages and make it a much easier surgery for those facing late-stage pulmonary complications. Vaccines for pseudomonas and cepacia could be fine-tuned, and we've seen how people without those bugs tend to have life expectancies comparatively sky-high.
Speaking of a "cure for CF" is way too simplistic, I believe, given how diverse its array of symptoms is, and how many stages it goes through. Correcting the deficient gene would "cure" everybody who isn't already sick, but do next to nothing for those whose lungs are FUBAR. Perfecting transplant would "cure" late-stage CF, but do nothing for those earlier on in the disease. And both of those could leave the other side effects of illness, like liver problems, need for digestive enzymes, etc.
I can see some aspects of the disease being effectively "cured" by then (or soon after). Improved genetic screening could help ensure healthy kids are born, instead of ill ones. Advances in lung transplants, and overhauls of the donation system, could fix the organ shortages and make it a much easier surgery for those facing late-stage pulmonary complications. Vaccines for pseudomonas and cepacia could be fine-tuned, and we've seen how people without those bugs tend to have life expectancies comparatively sky-high.
Speaking of a "cure for CF" is way too simplistic, I believe, given how diverse its array of symptoms is, and how many stages it goes through. Correcting the deficient gene would "cure" everybody who isn't already sick, but do next to nothing for those whose lungs are FUBAR. Perfecting transplant would "cure" late-stage CF, but do nothing for those earlier on in the disease. And both of those could leave the other side effects of illness, like liver problems, need for digestive enzymes, etc.
pharmaceutical companies can make more money developing drugs or cures for diabetes, heart disease and cancer than for CF because more people have those diseases.
however, it is a pharmaceutical company's DREAM to develop a drug or cure that has to be taken for the rest of a person's life - which would have to be the case for a drug to cure CF. Think of cholesterol drugs - old people take them and don't stop taking them until they die. What's the most profitable drug on the market? Lipitor. Partly because many people take it (many people have cholesterol issues) but also because people start and don't stop taking it for the rest of their lives.
Chiron and Genzyme make a KILLING over TOBI and pulmozyme cuz most of us starting taking it and we won't stop most likely.
So the theory that there's a cure and no one wants to release it, or that it's not being developed cuz no one would make money off of it is bogus. There's plenty of money to be made if someone - a company that CFF partners with, an academic institution, or whomever - discovers a life-saving treatment.
Tell me this - did the person who manufactured your computer that you're using right now do it to be nice to you? Or did they do it to make a buck?
What about the shirt on your back. Did someone make it because they cared about you - or because wanted to make money.
however, it is a pharmaceutical company's DREAM to develop a drug or cure that has to be taken for the rest of a person's life - which would have to be the case for a drug to cure CF. Think of cholesterol drugs - old people take them and don't stop taking them until they die. What's the most profitable drug on the market? Lipitor. Partly because many people take it (many people have cholesterol issues) but also because people start and don't stop taking it for the rest of their lives.
Chiron and Genzyme make a KILLING over TOBI and pulmozyme cuz most of us starting taking it and we won't stop most likely.
So the theory that there's a cure and no one wants to release it, or that it's not being developed cuz no one would make money off of it is bogus. There's plenty of money to be made if someone - a company that CFF partners with, an academic institution, or whomever - discovers a life-saving treatment.
Tell me this - did the person who manufactured your computer that you're using right now do it to be nice to you? Or did they do it to make a buck?
What about the shirt on your back. Did someone make it because they cared about you - or because wanted to make money.