Whated to know if I have anything to look forward to in my lifetime as far as a total cure or something that stops progression or loss of lung fuction or give us a noramal life im getting older im 34 and im getting to point were I think they will never find anything and its crazt to think that all these othere illnesses r getting cured or atleast stoped and we cant in this day and age makes me upset that this cf has taken my life in way more ways then just dieing couldn't finish college couldn't work couldn't get a home with a family or set goals or alot of life that should b a given like children and just a future sorry got all depressing there but im just upset that there will b another day that a cfer in pain or sick or afriad or died cause no one can find anything or hate to say it but want to find a cure its been way to long with the technology we have in this day and age sorry so long hope everyone gets healthy and stays healthy ill b thinking and praying for everyone who is sick
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is there ever goin to b a cure or atleast something that stops progression
- Thread starter cam
- Start date
S
stephen
Guest
For some of us - KALYDECO!
it’s almost like I don’t have CF anymore!
Note: I never any digestive issues.
it’s almost like I don’t have CF anymore!
Note: I never any digestive issues.
For some of us - KALYDECO!
it’s almost like I don’t have CF anymore!
Note: I never any digestive issues.
Talked to my son's CF doctor this past week. He said Kalydeco is just the first in a new generation of drugs that will slow/stop the progression. The life expectancy charts are going to be improved drastically. These drugs do slow the progression. Most drugs simply shift the life expectancy curves slightly to the right. Kalydeco and soon to be more drugs will change the slope of the curve. The major drug companies are currently researching Kalydeco type drugs to cure CF just to learn the technology, not just for CF but other cell based disease.
W
windex125
Guest
I hate to sound negative but my answer is what I feel and the answer is NO I will be 60 this Dec. and by the grace of God cause that is who I look to I am still here, My 20's-30's were not badat all till I got preg at 36 I was told I cld never have children so I did not use birth control after that doctor visit and 10yrs later that stick turned pink, why have no idea. My husband was over the hill about it. I was worried. But it worked out. Although I have more issues than ever before. I deal with it best I can. But you are young and although you are thinkg of marriage/children there are other alternatives foster care, working with children, joining some clubs make yr. life as full as you can. Put CF treatments first but know that that you are in chg. Never get the feeling oh why should I care Iam going to die that is notrue for a lot ofus look at me. I thought that way for a long time as well and was careless in my younger years. But here I am on this site telling s many as I can every case is different. So go outthere and live and if you need a therapist at any time to talk things over with go, I did and it does help/ Pat=59/CF
B
BreathinSteven
Guest
Hi Cam...
You're 34 -- I too have been where you are... I am 54 -- I was diagnosed at 13 in 1973... When I was diagnosed -- we were told that "a cure was just around the corner..." Mom volunteered for the CFF -- they were and are a pretty amazing organization... And one point in the late 70s or early 80s they switched their focus from patient assistance to funding research and finding a cure or treatment -- it caused a lot of people problems, but it seemed that it needed to be done to fund what was REALLY going to help us in the long run... Again, at that time with the new focus on funding research, we were told a cure would be around the corner... Then they found the genetics of CF -- again, surely, a cure was around the corner... It kinda got old after a while -- and I grew as skeptical as most.
Kalydeco sounds amazing -- though the first iteration is helping just a relatively small percentage of us (but helping in amazing ways), there are other drugs in the pipeline that will extend the number of us that Kalydeco helps... I will be very honest -- this is the first time in many MANY years that I'm excited about something for CF sufferers -- something that may actually give long-term help...
Even for those of us who have sustained substantial lung damage -- if we can stop that NOW, we may be able to lead a normal-ish life. There is a part of me that has great hope for Kalydeco and for other treatments in the pipeline... There is another part of me that, like Pat (windex), have been-there-done-that-heard-that so many times that we're just not buying that there will be something available in sufficient time for us...
I had a double-lung transplant 14+ years ago -- so, my lungs are no longer CF and the other aspects of CF simply have not impacted my life too greatly yet... But, I hope that there is something out there for you and so many other CF sufferers...
Another problematic issue is -- though you and I see this as a big deal and a devastating disease, in the grand scheme of things there just ain't that many of us out there... The CF Foundation does a great job in collecting money for research -- and frankly, CF takes out more children than many diseases, and people hate to see children die... That, sadly, is an advantage for us... But -- there are only around 30,000 of us in the US with CF. That sounds like a lot -- but for companies researching and producing drugs and whatnot -- it's a tiny amount when you consider there are millions of diabetics, hundreds of thousands of people suffering other lung diseases, millions dealing with cancers -- when we start picking and choosing who research dollars are going to, we've got a LOT of competition -- which is why a focused group like the CFF is important for us...
Love, Steve
You're 34 -- I too have been where you are... I am 54 -- I was diagnosed at 13 in 1973... When I was diagnosed -- we were told that "a cure was just around the corner..." Mom volunteered for the CFF -- they were and are a pretty amazing organization... And one point in the late 70s or early 80s they switched their focus from patient assistance to funding research and finding a cure or treatment -- it caused a lot of people problems, but it seemed that it needed to be done to fund what was REALLY going to help us in the long run... Again, at that time with the new focus on funding research, we were told a cure would be around the corner... Then they found the genetics of CF -- again, surely, a cure was around the corner... It kinda got old after a while -- and I grew as skeptical as most.
Kalydeco sounds amazing -- though the first iteration is helping just a relatively small percentage of us (but helping in amazing ways), there are other drugs in the pipeline that will extend the number of us that Kalydeco helps... I will be very honest -- this is the first time in many MANY years that I'm excited about something for CF sufferers -- something that may actually give long-term help...
Even for those of us who have sustained substantial lung damage -- if we can stop that NOW, we may be able to lead a normal-ish life. There is a part of me that has great hope for Kalydeco and for other treatments in the pipeline... There is another part of me that, like Pat (windex), have been-there-done-that-heard-that so many times that we're just not buying that there will be something available in sufficient time for us...
I had a double-lung transplant 14+ years ago -- so, my lungs are no longer CF and the other aspects of CF simply have not impacted my life too greatly yet... But, I hope that there is something out there for you and so many other CF sufferers...
Another problematic issue is -- though you and I see this as a big deal and a devastating disease, in the grand scheme of things there just ain't that many of us out there... The CF Foundation does a great job in collecting money for research -- and frankly, CF takes out more children than many diseases, and people hate to see children die... That, sadly, is an advantage for us... But -- there are only around 30,000 of us in the US with CF. That sounds like a lot -- but for companies researching and producing drugs and whatnot -- it's a tiny amount when you consider there are millions of diabetics, hundreds of thousands of people suffering other lung diseases, millions dealing with cancers -- when we start picking and choosing who research dollars are going to, we've got a LOT of competition -- which is why a focused group like the CFF is important for us...
Love, Steve
M
morgo
Guest
There has been a lot of progress made in gene therapies over the last 2 decades. If you want to cure the disease, you have to do so on a genetic level.
There are two strategies that can be used to achieve this. One is to replace the whole CFTR gene(requires viral vectors to integrate into the DNA), the other is to target the gene for correction using other genetic constructs(highly inefficient and requires other chemicals to mediate integration into the DNA). I've spent the last 5 years studying biophysics and molecular biology to establish a sufficient understanding of the molecular mechanisms for disease, specifically CF. I believe that it could be done today with existing bio and nano technologies. However, building a prototype and testing it would cost several hundred million dollars of R&D investment and is a 10 to 15 year process. For the 75,000 people worldwide effected by CF directly that is a large investment into a very small market.
It has been and will be my life's work to be free of this disease. If you want to discuss the details of these technologies I would be happy to share them with you in more detail in a disclosed and confidential environment. People much smarter than myself are continually working on this problem not only to treat CF but other genetic diseases as well, to which this type of biopharmaceutical technology has broader implications.
There are two strategies that can be used to achieve this. One is to replace the whole CFTR gene(requires viral vectors to integrate into the DNA), the other is to target the gene for correction using other genetic constructs(highly inefficient and requires other chemicals to mediate integration into the DNA). I've spent the last 5 years studying biophysics and molecular biology to establish a sufficient understanding of the molecular mechanisms for disease, specifically CF. I believe that it could be done today with existing bio and nano technologies. However, building a prototype and testing it would cost several hundred million dollars of R&D investment and is a 10 to 15 year process. For the 75,000 people worldwide effected by CF directly that is a large investment into a very small market.
It has been and will be my life's work to be free of this disease. If you want to discuss the details of these technologies I would be happy to share them with you in more detail in a disclosed and confidential environment. People much smarter than myself are continually working on this problem not only to treat CF but other genetic diseases as well, to which this type of biopharmaceutical technology has broader implications.
YES! YES! YES! Is is avail now. But not legal in the U.S. I am living proof that it works. Adult Stem Cells brought me back from the dead. and FEV1 from low teens to high twenties so far. going for my third treatment in couple of weeks. I am the third CF patient that my stem cell doc has treated. My CF doc says I have not proof, but then cannot explain why I have not needed a tune-up in 3 yrs. Before that I was weeks away from dying and 4 tune-ups a year were not helping anymore. Because it's not approved in the U.S., we have to raise the money for the treatment. I need to get 1 a year. But not sure for how long. This is very new and we still don't know how long it will take to reverse enough lung damage that I will not need anymore treatments. I travel to the Dominican Republic, where my doc has a clinic setup in central hospital in Santo Domingo. you can read my entire story in the archives, and here is an overview of the process. http://www.angelodistefano.com/adult-stem-cells-for-cf-overview/ every CF Warrior needs to know about this.
There are some really good things out there and the knowledge for new treatments is out there, which is great but it is also frustrating when you find out there are so many roadblocks and obstacles in the way before getting these treatments to the people. Is far too much information to put in a post but if you go to www.SkylersCFfoundation.20m.com on the first page there's a link to the patent and if you follow that link and read the patent you will see that they have the know how to make a wonderful new treatment. Like stated above, it is the lack of funds that is holding things up.
in simplistic terms, they basically can make the cells in the lungs behave and function like normal cells. Unfortunately this is temporary. How long it would last is not known yet, hence the need for clinical trials. However, periodically have to do a breathing treatment would be a lot easier than what people are already doing now.
I hope they can get the funds needed to get this through the pipeline and delivered to the people.
in simplistic terms, they basically can make the cells in the lungs behave and function like normal cells. Unfortunately this is temporary. How long it would last is not known yet, hence the need for clinical trials. However, periodically have to do a breathing treatment would be a lot easier than what people are already doing now.
I hope they can get the funds needed to get this through the pipeline and delivered to the people.