vickysmommy
New member
How will everyone react when they find a cure???!!!! Honestly, I dont know what I would do.
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what if they find a cure!
- Thread starter vickysmommy
- Start date
Emily65Roses
New member
This is going to sound terrible, but I haven't prepared for it, because I really don't expect to see it in my lifetime. So I have no idea how I'd react if it actually happened.
As a mother of a child with CF, only 4 years old, I hope and pray every day for a cure and believe that one day (hopefully in her lifetime) there will be a cure. If there is one, I will stop whatever I am doing, find her and hug her for a very long time....I will also have MANY tears of joy...oh ya, I will also call everyone I know to give them the good news!
ClashPunk82
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Emily65Roses</b></i><br>This is going to sound terrible, but I haven't prepared for it, because I really don't expect to see it in my lifetime. So I have no idea how I'd react if it actually happened.<hr></blockquote>
Same with me. It's nice to think about but honestly I doubt it will be in time for me. I am already being placed on the transplant list so no I don't often think about that for myself, but I do hope we find one someday.
Same with me. It's nice to think about but honestly I doubt it will be in time for me. I am already being placed on the transplant list so no I don't often think about that for myself, but I do hope we find one someday.
serendipity730
New member
I have to agree with Emily. It would be great if they found a cure, but I don't see it happening in my life time. Maybe in the lifetime of babies that are being born today. I think we mostly have to hope for extensions in life expectancies.
thefrogprincess
New member
I've been hearing that they are close to a cure for 20 years. I still hope for it, but I don't expect it.
vickysmommy
New member
last thing i heard as of finding a cure that they found the gene that causes CF and that they would find a cure within 10 years and that was back in the early 90s. If they did find a cure I think I would throw a very big party and make everyone I know come, including all of you! He He But I am a very optimistic person, maybe thats my weakness who knows ONLY GOD
Optimism isn't a weakness but I think a healing force. Thinking positive goes a long way in feeling good and believing good can happen.
I never have given it a thought either what I would do or how I would feel simply cause I don't think it will happen in my time either. But maybe that is the problem, the majority answered the question this same way, maybe for those who believe in a higher being, if we believed and had faith, maybe just maybe it would come in our lifetime - wouldn't that be great!
Sarah
27 w/cf
I never have given it a thought either what I would do or how I would feel simply cause I don't think it will happen in my time either. But maybe that is the problem, the majority answered the question this same way, maybe for those who believe in a higher being, if we believed and had faith, maybe just maybe it would come in our lifetime - wouldn't that be great!
Sarah
27 w/cf
The Cystic Fibrosis Foundation has been spouting the word "cure" for decades now. I now believe it is just a bogus slogan to keep the money coming in. I doubt seriously that there will ever be a cure. Especially if it involves genetic manipulation. I can't see the Conservative right allowing for such a cure to be found since they so strongly believe that genetic manipulation is "playing God."
UKBASEDJON
New member
Hi All
The talk of a 'CURE' for Cystic fibrosis is a very emotive subject isn't it. I suppose anyone who lives with a genetic condition holds out a hope for a cure. I think this is part of the coping strategy for living with a serious condition. How realistic it is, is normally the prelude to some very heated debates. Most organisations involved with the CF committee like to use this catch as it provides a focus for their organisations and more importantly the wider media world. This is not a bad think but I do find that when talking to individuals within these organisations that they don't fully appreciate the reality of this condition. A cure indicates that a treatment may become available that will correct the CF condition. To put it bluntly this will probably never be able to be achieved. I say this for one simple reason, CF effects every one of us at a genetic level in every organ and tissues in our bodies. It effects all the working components of us. Every cell we create in our bodies carries the defective CFTR gene. The highest mortality rates in CF are caused by lung disease were the defective gene causes most damage, but of cause many other principal organs are effected, pancreas, liver, immune system etc, and as we are living longer with this illness other symptom will perhaps become more apparent. However I believe we should stay optimistic. The money raised through the 'cure' label so to speak is being used to develop other treatments for CF. The mean average age of someone with CF is improving. The treatment of the lung condition is getting better.
I personally believe however that more emphasis should be placed on finding new 'non genetic' method of helping with the CF lung disease but sadly I don't get to make that choice. Perhaps new antibiotics, new anti inflammatory drugs, drugs that help the blood retain more oxygen perhaps. More creative thought need here I think.
Sorry to ramble on but this is a subject I guess we all think about. Most adult CF individuals I speak to don't believe that Gene therapy will benefit them. May be this is true, the task is Herculean to get the corrected gene into the lungs and get it to stay there. And what about previous damage, it can't correct for this I believe.
In closing I believe we need a more balanced approach. When dealing with the media a focus is a good thing but we in the CF community live with this condition and I believe we are entitled to a well balanced approach to future treatments that will benefit fit us all to some degree.
What are your thoughts on this?
Regards
Jon
The talk of a 'CURE' for Cystic fibrosis is a very emotive subject isn't it. I suppose anyone who lives with a genetic condition holds out a hope for a cure. I think this is part of the coping strategy for living with a serious condition. How realistic it is, is normally the prelude to some very heated debates. Most organisations involved with the CF committee like to use this catch as it provides a focus for their organisations and more importantly the wider media world. This is not a bad think but I do find that when talking to individuals within these organisations that they don't fully appreciate the reality of this condition. A cure indicates that a treatment may become available that will correct the CF condition. To put it bluntly this will probably never be able to be achieved. I say this for one simple reason, CF effects every one of us at a genetic level in every organ and tissues in our bodies. It effects all the working components of us. Every cell we create in our bodies carries the defective CFTR gene. The highest mortality rates in CF are caused by lung disease were the defective gene causes most damage, but of cause many other principal organs are effected, pancreas, liver, immune system etc, and as we are living longer with this illness other symptom will perhaps become more apparent. However I believe we should stay optimistic. The money raised through the 'cure' label so to speak is being used to develop other treatments for CF. The mean average age of someone with CF is improving. The treatment of the lung condition is getting better.
I personally believe however that more emphasis should be placed on finding new 'non genetic' method of helping with the CF lung disease but sadly I don't get to make that choice. Perhaps new antibiotics, new anti inflammatory drugs, drugs that help the blood retain more oxygen perhaps. More creative thought need here I think.
Sorry to ramble on but this is a subject I guess we all think about. Most adult CF individuals I speak to don't believe that Gene therapy will benefit them. May be this is true, the task is Herculean to get the corrected gene into the lungs and get it to stay there. And what about previous damage, it can't correct for this I believe.
In closing I believe we need a more balanced approach. When dealing with the media a focus is a good thing but we in the CF community live with this condition and I believe we are entitled to a well balanced approach to future treatments that will benefit fit us all to some degree.
What are your thoughts on this?
Regards
Jon
I think a cure will be found or possibly a treatment but I think it will first start with correcting it through an unborn child or CF carriers. I doubt I will be cured as Im listed for transplant and a cure wouldnt help me really anyway If i get transplanted. I dont think there will a "magic pill" to correct it but i think they may be able to prevent someone from having it with all the gene therapy research they do, same as with other genetic diseases. Another possiblitliy is with Transplants becoming so common and successful I think perhaps Stem Cell research will perhaps one day allow us to "grow" our own replacement organs if our organs deteriorate too much and perhaps the CF can be cured in them so it doesnt carry CF or we could itleast have transplants done like regular dental work! This could ofcourse take several years or 25 years. But I think that is the way science is headed. Just my opinion
i, like most of you think that i will never see a cure in my lifetime..i think the onlt real advance they will ever make with this disease is a way for early detection then prevention..like a test before the baby is born then some sort of shot to fix it.. how could they really cure this? our lungs a scared and deteriorating everyday..doesn't seem possible
I think the CF foundation is working on all aspects of the disease- a "cure" if you will plus better meds to treat symptoms. My son is 19 and if all goes well will be enrolling in a study this yr to see if the med turns on the gene- he does have a one fairly rare mutation and you have to have that one to be in this study- we are very hopeful and also realize this is just a first small step. Hope to know more about the study after this week.
<blockquote>Quote<br><hr>I can't see the Conservative right allowing for such a cure to be found since they so strongly believe that genetic manipulation is "playing God."<hr></blockquote>
well, in california the people got sick of waiting for our "government" to pull their heads out of their collective a$$es and allow research in that field(stem cell, etc.), so we decided to fund the research with state funds.
well, in california the people got sick of waiting for our "government" to pull their heads out of their collective a$$es and allow research in that field(stem cell, etc.), so we decided to fund the research with state funds.
We pray for a cure all of the time as well, we also believe in the Lord which gives us much hope and faith. My daughters faith is so strong and we know that if the cure is not for her in her lifetime than she will be still be OK and that God will always take care of her.
P.S. i do think that they will find a cure and my family and i always stay positive and look for the positives!!!!
kaitsmom<img src="i/expressions/rose.gif" border="0"><img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/sun.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0"><img src="i/expressions/rose.gif" border="0">
P.S. i do think that they will find a cure and my family and i always stay positive and look for the positives!!!!
kaitsmom<img src="i/expressions/rose.gif" border="0"><img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/sun.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0"><img src="i/expressions/rose.gif" border="0">
As an adult male with CF and obviously a carrier, I have made it my mission to never have children. At least in some small way, I will stop the spread of this horrific genetic disease.
While some will find my decision to be offensive, it is my decision. With all of the religious politics now flooding the US and world administrations, I find it highly unlikely that a cure for CF or any other genetic disease will ever be found.
While some will find my decision to be offensive, it is my decision. With all of the religious politics now flooding the US and world administrations, I find it highly unlikely that a cure for CF or any other genetic disease will ever be found.