Cure for CF??? "The spice of life perhaps"

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singlemomof2

New member
So who else has heard of the most recent breakthrough with CF research??? Tumeric and Curry both carry a common ingredient, curcumin. Apparently some mice who ingested large amounts of this agent, curcumin, have had their symptoms decrease and even disappear. Their life span increased as well, living as long as a mouse w/o CF.This was reported on CNN.com, in The Herald (a Halifax, Nova Scotia paper) as well as in "Science", the magazine.I don't know about you, but I am sooooooooo excited about this. They are hoping to start 'people' trial real soon. Can you imagine......a cure for our kids, brothers, sisters, for all with CF.Pray this is the breakthrough we needed. I pray for us all!Lynn(Emma, 7 w/CF and Erica, 5 w/o CF)GOD BLESS!
 
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serendipity730

New member
Hi, If I were you, I would take this new Curry thing with a grain of salt. I'm 21 years old with CF, and I have seen several "cures" come and go. Not to be pessimistic, but the cure for CF has to involve some kind of gene therapy, which is prob. still a while away. The media doesn't care if they toy with our hopes. The CFF addresses the Curry issue on their website...www.cff.org. Mary
 
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AbsintheSorrow

New member
Mary, I just wanted to put in my two cents real quick and say I agree with you. None of this will excite me until I see it approved by the FDA and on the market somewhere. Some guy in Iraq or Iran claimed to cure it a while ago, there's something you can inhale once every two weeks that will cure it, and now the curry thing. I don't really pay attention to any of it. I will start listening when something is approved by the FDA and is sitting right in front of me.
 
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anonymous

New member
I've posted on this site before asking if anyone has tried herbal remedies. I read on a website about oregano oil working as well or better than tobramyacin. In mice that is. However until human tests are done & the FDA approves, who feels safe trying it? Thank God for modern medicine & genetic research but I wish they would also go back to the basics in healing.
 
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anonymous

New member
I know both of you are right...but you both have CF as well...I do not. So to wish for my daughter to 'live' longer, get better, be cured, it is something that I have been struggling with since the day she was diagnosed 7 years ago. I think I still blame myself for her illness......afterall, she is part of me. None the less, I am excited about the news, remain hopeful for some kinda control for CF and remain forever optimistic of a cure, for her, for you, for everyone living with this unforgivable disease. Until that time......I'll allow this to keep a smile on my face.......and I too won't 'believe' it until the Doctor is writting the prescription with her name on it!singlemomof2Lynn
 
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anonymous

New member
Lynn~I too, like everyone else am skeptical. But I do believe that it is okay to get excited as long as you know it may be a false alarm. This sort of thing keeps me motivated. Yeah I have heard of several "cures" that did not become anything, BUT each time I do hear of something I get so motivated to try harder to be as healthy as I can for when (or if) the cure comes along. I know how the others feel, hearing of cures that are false, but for me, its a reminder of what I work hard for every day. I am working hard to have a good quality of life and even though I may not live to see a cure I want to be in the best possible health if one does come along. So I say keep that smile on your face and even if this is a false alarm who knows maybe the next one won't be...we all dream of a cure someday and hopefully it will be sooner rather than later.
 
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IG

Guest
Ok, the spice of Life was cute... <img src="i/expressions/face-icon-small-happy.gif" border="0"> But to say that it is a cure is totally wrong. If you actually read the article instead of just taking the information from a post you'd realize that it says that it helps fight CF, not cure it. They later explain that when injected with the curcumin the mice with CF live as long as the mice w/o CF. It might not be a cure, but it could be a step to finding a cure. It sounds like eventually they might find a way to prolong the life of a CFer significantly. Which in my book is amazing. So I think it is pretty cool. But we have to realize that we probably won't find a cure in our lifetime (as short as it is...) Unfortunately. I thought I'd post this to clear up any misconceptions...
 
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anonymous

New member
I decided to read up a little on this because it sounded interesting. Well I had no idea that when they have mice with CF they only have the GI symptoms. This is for any experiment they do for CF not just this curucim. In other words no lung involvment. So the curcumin allowed the mouse to be allieved of its symptoms, but they were only GI symptoms. The other thing they warned about is sometimes mice will react completely different than humans...in other words it may have NO effect on humans. Hopefully it will...I just know as a CFer I block my heart from getting too excited so it won't break if things don't work out. Hopefully this will be a major breakthough and really add quality to our life...
 
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anonymous

New member
I am so surprised everyone is trying to beat down this woman's hope. False expectations, maybe, but don't discount her hope. Its widely felt that CF will not have a "cure" before it stops being the reason why CF'ers die. If this substance has the prospect of offering CF'ers a chance for a longer, healthier life why not have hope. There will always be obstacles but you don't have to always succumb to them.
 
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Dea

New member
I just want to say...that I dont believe anyone is trying to beat down this woman's hope....but as a 30 yr old female with CF myself...it is hard for us to put ourselves in a situation of "false hope" I guess one could say. Believe me...I hope that this does work....and I know everyone else does as well. We just dont want to believe so strongly...and get shot down ourselves. But I agree that if there is something out there that is going to help us live longer and healthier lives....I'll be one of the first in line! Take Care all...Dea
 
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singlemomof2

New member
I must admit, I was too 'eager' on Friday when I first heard the news of the whole 'curry' issue. I myself have come down a bit......I think it was just hard for me, thinking that this might actually be something. For all of you who commented, thank you. Everyone had an opinion, a point of view, which not only made me stop to read between the lines of the information I was handed but it also lead me to believe that there will be something for all of you suffering with CF....it may not be in the near future, but it will come. I will hold out hope that it will be soon. Afterall being optimistic is best.Thank you again for all your replys......Lynn
 
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anonymous

New member
Hi All,As my son is only 12 months old, this is really my first experience with "breakthroughs" as such.I must admit like the other mother that I got myself quite excited and really had to come down and also tell myself that it may not work and to always have that in the back of my mind as well.I guess over time I will learn that I am going to require a bit of patience!Rebekah Mother to Matt 12mths WCF
 
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AbsintheSorrow

New member
I just wanted to say that I of course was not meaning to burst anyone's bubble. I just know better than to assume anything about all of the "cures" that come through. And as for Rebekah, I'm sorry you haven't had much practice with this yet, but you'll get used to it. Heh. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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anonymous

New member
Hi folks..... this CF is all new to me. Just two weeks ago, both of my future step daughters was diagnosed at Geisingers childrens hospital in Danville, PA. They are emily 2yrs old,, and bethany at 4 yrs old. I am also a medic, so I have been doing a lot of reading and listening to different doctors, and picking their brains for information. Although CF is a really tragic and sad situation, we have to keep in mind that until 1989 they really didn't know much at all about it. I do know that we all need to keep a good positive outlook on any research that is going on. My two girls have had the GI problems primarily, so that is why it took so long to find. If the "cure" is in a spice,,,, or if it is in something else,,,, they will find it, and many doctors and scientists belive it is not in the too far future. We need to keep hope, and keep supporting each other. My fiance has been having a real hard time blaming herself and questioning God's will and reasoning, as I am sure everybody has gone through. Hold each other up and prayer and thoughts, and pray everyday for the answers for a real cure...... Yancey
 
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anonymous

New member
I too was and still am very hopeful for this discovery of how to help Delta F508 do it's job. I spent a few days gathering all information I could about this study. Bottom line, even if it turns out to be only a piece of the puzzle to extend a healthy long life to CFers, which to me as a Mother of a CF Child is a blessing from God!The problem with the mice was that the CF gene doesn't affect the lungs of mice, only GI. That is why the elimation of symptoms and correction of the CFTR function was only seen in the GI. Additional test-tube studies, performed with the University of Toronto, showed CFTR got to the cell surface and functioned after addition of curcumin. CURE is a big jump, but steps to make this terrifying gene mutation less damaging and more manageable is almost as good.I know in my heart and in the direction and new pieces of the puzzle, in the next 5-10 years we can look forward to better managing of this gene, so our lives can focus on living well and longer.Side note: It said it wasn't injected as stated earlier, it was feed.Note from Forbes article:"Feeding curcumin to mice with the DeltaF508 mutation basically corrected the malfunction in the cells. "'To make a very long story short, what we think we've done is come up with a drug or compound that puts a blindfold over the inspector," Caplan said. "There was both a physiologic correction and a survival benefit when curcumin was used orally,'" Campbell added. "In a series of elegant experiments, Caplan and Yale CF specialist Dr. Marie Egan showed:· Electrical measurements of how well nasal tissue could secrete ions also showed "a dramatic effect," Caplan said. Curcumin-treated mice improved from very poor levels to almost normal.
 
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anonymous

New member
I'm not a CF person or parent, but I came across this thread because I was curious what people in the CF community were saying about the turmeric paper in <i>Science.</i> Now that I've read these posts, I'm wondering why no one seems to be planning to try eating turmeric/curry. The dose that was used with the deltaF508 mice is one that should be well tolerated by humans, and is already taken by humans. So, in this case anyway, doing the experiment on humans seems to be low-risk....<p>
 
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AbsintheSorrow

New member
Because until it's an actual cure that works in people, and not just rodents... I don't tend to believe anything I hear. I've heard quite a few of these before, and they're never true. I just got used to ignoring them.
 
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knifewieldingmonkey

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i>I'm not a CF person or parent, but I came across this thread because I was curious what people in the CF community were saying about the turmeric paper in <i>Science.</i> Now that I've read these posts, I'm wondering why no one seems to be planning to try eating turmeric/curry. The dose that was used with the deltaF508 mice is one that should be well tolerated by humans, and is already taken by humans. So, in this case anyway, doing the experiment on humans seems to be low-risk....<p><hr></blockquote>I eat about 3-4 curries a week before i read this <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
hello all, I have read many of your postings and as a first time reader was very shocked. I am 28 with CF and god willing plan on being 38, 48 and so forth. You all are so very pessimistic, not at all my personal CF outlook. As a respiratory therapist that holds a graduate degree I am not blindly optimimistic. I, as of all of you, am well aware of the grim reality of our disease. But this is one absolute truth, without hope we have nothing. I have seen many people sucumb to death that have no hope and I refuse to be hopeless. Hence, I will purchase this root extract and pray that my body heals. Luke Bailey, MBA RRTCystic Fibrosis Survivor
 
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