You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Opinions wanted...
- Thread starter jenhum
- Start date
Truthfully, it offends me a little that someone would infer that a genetic disease like CF can be as good as "cured" with something like that. I realise there are treatments out there that may, in the future, lead to a huge breakthrough.. but "miracle" cures, I don't really believe in.
Emily65Roses
New member
I tend to agree with Emma. I'm so sick of hearing about the miracle cures out there, and how none of us have a problem because there are 70 year-olds with CF, and people doing amazing things. The whole curcumin thing annoyed me as well. It started by saying it was a cure for CF!! Then you find out later it only helped with GI symptoms, and while they can be a pain, generally it's the lung symptoms that kill, so that's where the true problem lies. The whole story on the bodybulding person, and CFers running marathons, etc. I am not about to knock these people, because that's definitely cool. However, sometimes I feel like this is everyone telling us to take more control of ourselves and just BE healthy if it's what we want. Not everyone is capable of all the things that some of the "healthier" CFers are doing.
I also realize there are old people with CF, 70 year olds and even up. However, these people, I guarantee, have milder cases than most of us. The reason they're living so long is that the CF doesn't really get in their way as much as it does the rest of us. I'm not saying it's not cool that there are old people with CF. I'm just sick of hearing how we don't have to worry becuase of it. Yes there's people with CF living into old age, and yes it's awesome, but no that does not generally mean that I will live that long myself. I'm not a brat with a big negative attitude, I'm actually fairly "optimistic," but on a very realistic level. I don't know why I'm still babbling, but I just wanted to share my two cents on the whole thing. <img src="i/expressions/rose.gif" border="0">
I also realize there are old people with CF, 70 year olds and even up. However, these people, I guarantee, have milder cases than most of us. The reason they're living so long is that the CF doesn't really get in their way as much as it does the rest of us. I'm not saying it's not cool that there are old people with CF. I'm just sick of hearing how we don't have to worry becuase of it. Yes there's people with CF living into old age, and yes it's awesome, but no that does not generally mean that I will live that long myself. I'm not a brat with a big negative attitude, I'm actually fairly "optimistic," but on a very realistic level. I don't know why I'm still babbling, but I just wanted to share my two cents on the whole thing. <img src="i/expressions/rose.gif" border="0">
I totally agree with both emma and emily! Just because there are older people out there with CF it doesn't mean the life expectancy has changed and we're all going to live to old age. And also agree, fed up of hearing there is a miracle cure! Great that new experiments are obviously helping some ppl but not everyone is the same though. I had a quick look at that site, good for them if they have found something that helps them!
Emma 18 cf
Emma 18 cf
serendipity730
New member
Sugars that heal...what a bunch of bs! I am sick of people/drs dangling things like this in front of us. I have a degree in biology, and none of this really makes scientific sense. I also resent his calling CF terminal illness! My pft's are in the 70's, I'm not terminal! Generally, I think of end stage cancer as terminal, not a chronic illness.
I agree with just about everyone else here.... The day i see someone who has a moderate ( or even severe) case of cf, and hasn't done well in years, and tries something, and suddenly starts to improve, is when i will believe we found something legit. So far the only thing i have seen that made any improvement to me was Glutathione. After reading others stories about it and what it has done for them, i decided to look into it and started reading about it and what i read made a lot of sense, so i decided to give it a try. It did make a few profound improvements for me and i am more than happy that i tried it. I am certainly not going to start taking every product that seems to be jumping on the band wagon these days. The curcumin idea sounded ridiculous to me right from the start, as do many other "miracle cures". To be perfectly honest i dont believe we will find a "cure" ever. We will most likely just find a new treatment, kind of like insulin to a diabetic, that will enable us to keep things at bay and under control. Then again, even if they ever found a "cure", those of us who have already suffered lung damage and other effects, will not be cured. It would only halt further damage , which of coarse we would be happy about, but we wouldnt be cured.
~Diane 39 / cf / diabetes / b.cepacia
~Diane 39 / cf / diabetes / b.cepacia
I read their story page...It didnt really give a good "story." and one of the pictures taken to "prove" those sugars helped was of them taking a picture of the girl getting her o2 checked...and the proof was it was at 100...Umm ok...I have been told there are several tricks into raising your O2 jsut long enough for those hings to read it...for example deep breathing with O2 on...*shrug* i dont know if its true or not but to me proof that her O2 is high doesnt neccessarily mean that she has perfectly healthy lungs now. You can have good O2 and still have infections and a lower Pft function. Like those who are at 20-30% PFT and still have good O2 and dont have to wear o2.