Finding A Cure for CF

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anonymous

New member
I am new to all of this and I was wondering if people think they will find a cure for cf someday?

I pray and try to stay positive about it all..because the way things are going today anything can happen. I know medically cf has come a long way since they first found out about it...and there is ton of new medicine out there but I have not been around to see it all come and the progress that they really have made.
Just wondering what your opions were on this subject for some of you that have been around for a while and have seen how far they have come.

Thanks for any feedback....I know everyone probably won't be as positive as others but I hope that you believe...because that's all we can do.(except help raise money so they are able to do all the research we need)<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
Well, there won't be a cure for CF in the near future, if by cure you mean no more ill effects from having CF at all. If instead you mean by cure, free from lung disease, well clinical trials etc take up so much time that something identified now as being effective may take upwards of 6 years to get to the end consumer.

However, if you take a look at the cf trust (UK) and their research into gene therapy, involving a liposome as a vector, together with promoters etc., then they have released a timetable showing that if all clinical tests are succesful then the 'cure' could be with us by 2013. There is good reason to think it will be successful...certainly safety trials seem to show its okay. Don't forget for a cure, there doesn't have to be 100% gene transfer, 5-10% CFTR expression will suffice. The cf trust are 'cautiously optimistic'

There are also other avenues which are being looked at other than gene therapy...I'm sure other people know a lot about this. Again, it depends on the success or not of clinical trials.

I personally have a lot of hope for the cftrusts solution...so 2013 could be a landmark year. Then again, who knows?
 
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anonymous

New member
yes by a "cure" I mean no more lung disease. That is he most dangerous part of cf right?
That is great new to hear! How come they can do this is the UK and not here? Will the "cure" be available to people in the US?
 
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anonymous

New member
i don't pretend to know all about cf, my son was only diagnosed 30 months ago,he's 8 now . why would'nt they find a cure? i assume people were dying of diabetes before they could "manufacture" insulin. they can do all sorts now. i really think they will find a cure, whether it is in my sons lifetime who knows!!!! i just feel very optimistic about it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

i don't pretend to know all about cf, my son was only diagnosed 30 months ago,he's 8 now . why would'nt they find a cure? i assume people were dying of diabetes before they could "manufacture" insulin. they can do all sorts now. i really think they will find a cure, whether it is in my sons lifetime who knows!!!! i just feel very optimistic about it. <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>


Cure means eliminating the disease altogether. Things like insulin control the effects on the body or counteract whats not working right.

So although they may come out with better drugs that limit the effects to the lungs (extended life and improving quality)....I doubt the will "cure" CF.
 
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Diane

New member
A cure ? ........... No
A way to treat cf better? ........yes
I do believe they will find better treatments and ways to manage cf better and halt progression . How can you possibly "cure" a genetic disease ? Once you have the faulty cf Genes you are stuck with it .In my eyes , the only way to eliminate cf is to prevent it . I do however believe there will be a treatment discovered .. like insulin to a diabetic . A very effective way to treat and prevent further complications but certainly not a "cure" . I have high hopes they will come out with something in my lifetime to help with the complications of cf, Hopefully soon.
 
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thelizardqueen

New member
Like Diane said - a cure? - No. A way to better treat the disease so that people are living even longer - yes. CF has been known to the medical community for what, over 40 years. And yes we have come a very long way in the fight, but we are not even close to a cure. I've been told for a good 15 years that I'll be cured before I'm 30, that a cure is within my reach, that it will be cured in my lifetime. I have a very hard time swallowing that. I'm being realistic here. A cure won't be found in the near future, or even in the distant future. An effective way to treat CF like insulin treats diabetes, yes.
 
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anonymous

New member
My bet is on new treatments to prevent or reverse lung damage as being the likely path to CFers having more normal average life expectancy. I'm thinking of pseudomonas vaccines as being a big part of this goal along with a reliable way to kill off the mucoid/biofilm version of PsA; likewise ways to get rid of cepacia B., MRSA, etc. Seems to me we're not asking too much if you compare it to the progress made against AIDS since 1989 when the CFTR gene was identified.
 
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anonymous

New member
I am still amazed at how many people I have to explain CF too in this day and age, but everyone knows about AIDS. Thats why I believe they have come further with that than with CF.
 
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fugikitten2087

New member
I've given up on a cure. Better treatment most deffinatlly. and if there is a cure it isnt going to be in my life time. I hope one day they will but I've been hearing "we're really close" for so long I just assume thier lieing.
 
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lilmac7

New member
A cure?.....No! I'm sorry to say but there's alot of what I'd like to call 'medical politics' out there. We have to face the facts it is a business for the pharmaceutical companies out there so for them to come up with a cure would proberably make them some money in short term for whoever that can find a way to afford it, you know it would cost four arms, three legs and two heads to pay for it! lol! and then those patients would need nothing from them again in life. They don't see an approach like that wise, so the other thing to, do which they obviously have done as people with CF are living longer now a days compared to years gone, is to find medications/therapies etc. to preserve the life of a cfer as long as possible providing that they follow their regime, take their drugs constantly and live better and longer than if they didn't do anything at all. And as long as patients do this, which we have no choice unless we prefer to die, they rack up millions or billions long term.

And that's just my point of view, so in short I'll agree, a 'cure - no, better treatments - yes
 
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NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lilmac7</b></i>

A cure?.....No! I'm sorry to say but there's alot of what I'd like to call 'medical politics' out there. We have to face the facts it is a business for the pharmaceutical companies out there so for them to come up with a cure would proberably make them some money in short term for whoever that can find a way to afford it, you know it would cost four arms, three legs and two heads to pay for it! lol! and then those patients would need nothing from them again in life. They don't see an approach like that wise, so the other thing to, do which they obviously have done as people with CF are living longer now a days compared to years gone, is to find medications/therapies etc. to preserve the life of a cfer as long as possible providing that they follow their regime, take their drugs constantly and live better and longer than if they didn't do anything at all. And as long as patients do this, which we have no choice unless we prefer to die, they rack up millions or billions long term.



And that's just my point of view, so in short I'll agree, a 'cure - no, better treatments - yes</end quote></div>

A cure would most likely require medicine to be taken for the rest of CFer's life.

So your theory that there's no money in a cure is wrong, my friend.
 
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anonymous

New member
a cure is on the way, being developed in the UK. And yes it cures the defective genetics by replacing the gene in the defective cells. Amazing stuff really once they manage to find a way to target the right cells i.e. the lung epithelium. However for us adults this kind of cure is too late as the lung damage has already been done as replacing the gene doesn't reverse damage already done. It would only work really on the very young before damage and colonisation has taken place. The Uk puts far too much research in this cure and not enough money into funding research into new treatments, so us adults loose out.
So yes, a cure is on the way, but its kind of irrelevant for adults who are already living with it.
 
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Rokiss12

New member
so my mom and i were listening to a radio program a couple weeks ago, and they had a dr on about CF, and the cure. he made a metophor...roughly it was: "1989- we were in maryland in the US, we've made it all the way to DC, onto the block of a hotel in DC, into the hotel, up the elevator to the floor of our hotel room, standing outside the room...and now all we have to do is hope someone calls room service.' that was SO rough, but he actually used the whole maryland/hotel analogy...i added the room service part :p

i thought it was a cute way of putting it, and i hope it helps!
 
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lilmac7

New member
well Amy my definition of a cure differs from yours, what you are mentioning to me is a treatment to eleviate all symptoms if taken constantly with some sort of regime, whether it be an injection every couple months or pills everyday for the rest of your life to me thats a treatment because once it's stopped all the issues will return full force. A cure to me would be either a one time substance/drug administerred whatever way and poof all is well for the rest of life, or a period of administration of the substance/drug to take it's effect and completely get rid of the disease. But that's just my opinion of the definition of cure, hope i didn't offend you
 
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NoExcuses

New member
well, let's go on your theory.

What if this debate was about small pox.

Prior to a small pox vaccine, someone could have had your argument. "Pharma companies won't develop a cure because they will lose out on money."

This cure, or vaccine for small px (because those who are vaccinated do not get small pox), has to be given to every human that's born. These pharma companies make money from the vaccine.

Here's another example of how a cure comes to the market and pharma can make some money.

either way you look at it, a cure can occure with profits.

and no, you didn't offend me. it's a good discussion and many people have misperceptions about pharmaceutical companies.
 
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anonymous

New member
I believe a "functional" cure will be developed, though many smaller steps will precede it. CF is a disease that can't truly be compared with AIDS or other diseases caused by mutating viruses. Essentially we know what causes CF, we just don't know how to fix it. The mutation that causes CF isn't going anywhere, it'll stay the same in you for your whole life. I think there could be several "functional" cures to it, perhaps recovering misfolded CFTR and getting it to properly fold would be one avenue that doesn't require fixing the gene itself. There's no reason to believe it CAN'T be cured. It's just a matter of when.

In many ways a functional cure would be just as good as a cure. Sure there would still be inconveniences, but death from CF could be eliminated.
 
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NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

I believe a "functional" cure will be developed, though many smaller steps will precede it. CF is a disease that can't truly be compared with AIDS or other diseases caused by mutating viruses. Essentially we know what causes CF, we just don't know how to fix it. The mutation that causes CF isn't going anywhere, it'll stay the same in you for your whole life. I think there could be several "functional" cures to it, perhaps recovering misfolded CFTR and getting it to properly fold would be one avenue that doesn't require fixing the gene itself. There's no reason to believe it CAN'T be cured. It's just a matter of when.



In many ways a functional cure would be just as good as a cure. Sure there would still be inconveniences, but death from CF could be eliminated.</end quote></div>

Really, really, REALLY well said.

Bravo! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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