sweetninis
New member
how long do u think it would take when they will find cure for cf and no human being on this earth will die out of cf
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When cf will no longer be an incurable disease??
- Thread starter sweetninis
- Start date
It depends on your definition of "cure". In the past 25 years, since I was dx, the improvement in knowledge, treatment and drugs has been mindboggling. Those things in the pipeline bring even greater promise.
When I was dx at age 47, the CF world was turned up side down. Now people being dx at 60 and beyond is almost common.
If your definition of "cure" is a magic wand in the form of a pill or a "polio cure", I would tell you that I believe that would be a long way into our future.
Bill
When I was dx at age 47, the CF world was turned up side down. Now people being dx at 60 and beyond is almost common.
If your definition of "cure" is a magic wand in the form of a pill or a "polio cure", I would tell you that I believe that would be a long way into our future.
Bill
sweetninis
New member
i hope that day come soon when cf would be equal to sugar
K
Kaethe108
Guest
Diabetes
imported_Momto2
New member
Umm, I dont think diabetes has anything close to a cure....my sister in law has type I and suffers quite a bit from it.
I also dont think CF will have a "cure" for another 20+ years. Our current technology is not up to it. A more effective treatment? Possibly. I've heard the word "cure" be bounced around so shamelessly since 1989 when the gene was discovered. Been waiting for over 20 years, like everyone else, and watching my CF friends pass one by one. I think, sadly, we will continue to wait for quite a long time.
I also dont think CF will have a "cure" for another 20+ years. Our current technology is not up to it. A more effective treatment? Possibly. I've heard the word "cure" be bounced around so shamelessly since 1989 when the gene was discovered. Been waiting for over 20 years, like everyone else, and watching my CF friends pass one by one. I think, sadly, we will continue to wait for quite a long time.
W
welshwitch
Guest
The progress we've made on CF treatment has been great--just look at the median age rising. I'm 32 and no way close to slowing down.
Instead of waiting around for a cure, I just think about what I can do. I work my butt off to keep my lung function good, eat right and take care of myself so I will be an old lady <img src="i/expressions/face-icon-small-smile.gif" border="0">
Instead of waiting around for a cure, I just think about what I can do. I work my butt off to keep my lung function good, eat right and take care of myself so I will be an old lady <img src="i/expressions/face-icon-small-smile.gif" border="0">
This topic is a touchy one and I'm probably gonna get bashed for my opinion but w/e I'll say my piece/what I think anyways. Honestly I doubt we'll ever see a cur for anything other than possibly pandemic type diseases and even those wouldn't be cures but preventions in the form of vaccines - which is what it is for Polio, no cure if you do get it the only cure then is time instead they go for prevention due to the severity of the disease and that way they can still make money off the masses. I've said it before and I'll say it again, when last has anyone heard of a cure being discovered and broadcasted to the public? I can only think of one and that's Vitamin C for Lime disease, and that wasn't even a drug. I also can't help but think that if that disease happened in this day and age they'd quicker go for finding some type of drug to break off in our wallets before telling us a simple, cheap thing as Vitamin C will cure it. Bottom line there's no money to be made in cures - end story. I was diagnosed a couple months old and am now 30 and guess what no cure yet scientists can do something as immensely sophisticated/mind boggling as clone sheep and you can tell me that no diseases in that time frame they've found a cure for? Come on! They (drug companies backing the scientists) don't want to find cures because there's no money to be made in that, they'll find better treatments and expensive drugs to eliminate the issues/symptoms caused by the disease but it will require you to be on them for the rest of your life! More expensive drugs for you to take which keep you alive longer means more profit for them. Don't get me wrong I'm grateful for the advances made which has allowed CFers live longer healthier lives but the fact of the medical politics of it just angers me sometimes. I'm also a skeptic when it comes to these foundations that claim "Raise funds to find a cure for X disease" - to this day NONE have came to fruition so where's all the money going? To awareness and push for studies and discoveries of more and better therapies yes but no cures.
And even then with all the money collected by these foundations that supposedly go to these drug companies for them to do these trials and tests for new drug developments another thing that angers me is we the population that donate and raise these funds have yet to hear "Well since those donations were a big assistance for the cost of studies and development we can offer the drugs at a much cheaper cost" - NOPE! They still just financially rape us. I also believe that IF a cure was to be found for anything it would probably be by a country that their Govt. covers healthcare and my reason why I think that is because they would be the ones to save tonnes of money by curing their people instead of treating them their whole life and have enough push to make it happen.
And there you go, that's my thoughts on it. I've got my flame suit on so fire away if you feel to do so <img src="i/expressions/face-icon-small-wink.gif" border="0"> jk
And even then with all the money collected by these foundations that supposedly go to these drug companies for them to do these trials and tests for new drug developments another thing that angers me is we the population that donate and raise these funds have yet to hear "Well since those donations were a big assistance for the cost of studies and development we can offer the drugs at a much cheaper cost" - NOPE! They still just financially rape us. I also believe that IF a cure was to be found for anything it would probably be by a country that their Govt. covers healthcare and my reason why I think that is because they would be the ones to save tonnes of money by curing their people instead of treating them their whole life and have enough push to make it happen.
And there you go, that's my thoughts on it. I've got my flame suit on so fire away if you feel to do so <img src="i/expressions/face-icon-small-wink.gif" border="0"> jk
M
Mommafirst
Guest
I wish I knew. I wish I could say soon. But medicine moves slowly, and even though there are amzing possibilities in the pipeline, there are NO long term studies that can tell if these meds will work forever or if one might develop an immunity to it or rotten side effects.
I don't want to sound like a pessimist. I just want to be a realist. I anticipate CF will be very different in the coming decades, but I don't anticipate that it will be "cured". JMO.
I don't want to sound like a pessimist. I just want to be a realist. I anticipate CF will be very different in the coming decades, but I don't anticipate that it will be "cured". JMO.
imported_Momto2
New member
Dont mean to sound overly negative, but I think the median age of survival is greatly inflated by people being diagnosed much much later in life with relatively mild mutations. There are still children and teenagers dying from CF all the time. The more people with "mild CF" that you geneotype and diagnose, the higher the median survival age, even though little has changed for those with moderate to severe CF.
sweetninis
New member
sometimes i wonder if curing cf patients is difficult why dont dr find something to cure cf carriers no carriers no cfers how is that?
Sara: I'm really disappointed in you. You should know late dx doesn't equal "mild CF". I believe later dx does mean milder lung disease. I won't repete here my medical history or the number of hospitalizations or my surgeries. CF is not only a lung disease and you know that.
LIKE YOU I WAS BORN WITH CF.Bill
LIKE YOU I WAS BORN WITH CF.Bill
S
stephen
Guest
From my experience, a late diagnosis did not mean milder lung disease. Although I do not suffer from any digestive problems, thank G-d, I do have moderately severe pulmonary issues.
My last FEV1 was 39%. It's usually around 49%. I'm on IV antibiotics right now, hoping to get it back to near 50%, please G-d.
Although I had persistent lung, sinus, and "other" problems all my, I was not diagnosed with CF until the age of 63. Sweat tests were always negative, which is the case in a small percentage of people CF and particular mutations. Genetic testing did not exist, and/or it was not what it is today. I was being treated for persistent lung infections and Bronchiectasis for many years before the CF diagnosis.
To answer the original question, I would be quite surprised if there wasn't a "cure" for CF and other genetic diseases in less then 10 years, please G-d.
Stephen
70 y/o with CF (D1152H, G542X0) and Bronchiectasis
My last FEV1 was 39%. It's usually around 49%. I'm on IV antibiotics right now, hoping to get it back to near 50%, please G-d.
Although I had persistent lung, sinus, and "other" problems all my, I was not diagnosed with CF until the age of 63. Sweat tests were always negative, which is the case in a small percentage of people CF and particular mutations. Genetic testing did not exist, and/or it was not what it is today. I was being treated for persistent lung infections and Bronchiectasis for many years before the CF diagnosis.
To answer the original question, I would be quite surprised if there wasn't a "cure" for CF and other genetic diseases in less then 10 years, please G-d.
Stephen
70 y/o with CF (D1152H, G542X0) and Bronchiectasis
imported_Momto2
New member
Printer, Yes I am aware of that late diagnosis does not always track to severity. However, I personally think that there are some people with milder CF than others, just like there are some folks who do take care of themselves and others who dont. I have seen info categorizing the major mutations (severe, moderate, mild) and discussing the differential in life expectancy, so I do not think I am way off base here. I said NOTHING in my post regarding severity equaling ONLY lung disease, so I am not quite sure why you are jumping on that. You can say whatever you want, but as a trend, if you're still alive at age 60, you are either not a super-severe case OR you have busted your ass to take care of yourself and had some luck along the way. I also think there are secondary trigger genes that count into when the disease truly takes off- a lot of that is luck too. I've read your file and yeah, your medical history sucks, but you are clearly a class A fighter, which counts for a hell of a lot. Please ask for clarification next time. You're not the only fighter on this board with a medical record that requires its own personal filing cabinet.
imported_Momto2
New member
Printer. Still somewhat confused by your comments, but hey, if people always agreed and comprehended each other completely, life would be totally boring.
: )
: )
Sara: I have read and reread your post and it still sounds to me that you said, all CFers who were late dx have mild cases and effect thestatistics unfairly. If you say some cases do, then I agree. It is also true that, of all of the infants recently dx there is a percentage dxwith "mild mutations" who would never be dx otherwise.
I have a cousin who lost two children in the early 70s, as infants, as a result of "failure to thrive". Not of CF. We can certainly conclude, given my mutations, that they died from CF and were not dx.
Bill
I have a cousin who lost two children in the early 70s, as infants, as a result of "failure to thrive". Not of CF. We can certainly conclude, given my mutations, that they died from CF and were not dx.
Bill