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.
Cure for CF??? "The spice of life perhaps"
- Thread starter singlemomof2
- Start date
singlemomof2
New member
CHANELLE.......I was truly touched by your message to me....I cried tears of sadness for you, for the one child already diagnosed with CF and tears of hope and I pray for you when your other 3 will be tested. I will keep you in my thoughts and prayers and hope for good news when you return to chat with us.I understand what you mean about being overwhelmed and all that....my daughter was diagnoses 7 years ago and I am just starting to be able to talk about it and come into these sights to read of others experiences. Ofcourse not all news is good news, but I have learnt so much form other posts in here, as I hope you will too. Please feel free to email me at my personal email, if you have MSN Messenger, you can add me as well.valuebulb@hotmail.comTake care and God Bless!Lynn
Dear chanelle, My neice jordyn 7 was diagnosed @ 6 months, yea my neice, does that make it any different from her being my child? NO i love her just the same as my own children... I was tested myself during pregnancy and found out, I dont carry the gene but my children may... So i fight this CF battle now for a longer prolonged life for my neice and future grandchildren and there's... We have our own walk site in Havre De Grace,Md... I know that we may not be close in hand But close in heart for a great cause to "CURE CF" & with us all coming together for a cure in MAY we will beat this genetic disease!!! If you ever need someone to talk to and any information Please feel free to email me, Sincerely,Tonya Tontee4165@hotmail.com<img src="i/expressions/heart.gif" border="0">
<img src="i/expressions/heart.gif" border="0">My son is 8 months old with CF, so, obviously, this is all new to me. I, too, try not to get my hopes up too much when I read things like the "curry" news, BUT...It does get me excited that...AT LEAST it's in the news...CF is being talked about...Awareness! I have no other option but to fight this disease for my son, for my friend's son, for my new "CF families". I DO have hope for the future, I DO have faith, and I WILL fight this as long as I have to. So, I'll walk in the "Great Strides" and be on every commitee for every CF fundraising event that we have, and we'll continue to make "65 Roses" bracelets, and washing cars and holding bake sales for CF...because of that hope. And I WILL pass on this hope, faith, and fight that I have to my children (one with CF and one without CF). This may be naive of me, but it's all I know right now. Amanda
To Amanda,I just wanted to say that it is not being naive of you at all! I think it is great that you can do all these things to help raise money for CF research. I also have hope for my future as well as everyone else out there with CF. I am now 30....and was diagnosed at about 6 weeks of age....so I have seen many new things come about for CF. I also have a sis without CF and a brother with CF. I became a committe member with the "Great Strides" in our area 3 yrs ago...and I plan to be a part of it as long as I am able! I believe the biggest thing in our way is AWARENESS....so if we all work in our own areas...eventually we will spread the word! Take care!Dea
Augustmoon
New member
<img src="i/expressions/heart.gif" border="0">Thanks, Dea! I appreciate it. I believe there's a battle ahead, but the outcome will be worth it <img src="i/expressions/face-icon-small-blush.gif" border="0">). If you'd like to see Ethan, his website is www.fightforethan.com. Thanks again!
I wouldn't say that I am the kinda person that buys into all potential treatments and "cures." But I am a very hopeful person! I am always excited when I see new things like this in the news. And if I didn't look into these potentials I don't think I would be as healthy as I am today. I opted to be on the original study for inhaled Tobramycin(sp?), and keeping in close contact with Dr. Clark Bishop at the Utah Valley Institute for Cystic Fibrosis, I have maintained health extremely well with Glutathione treatment!(inhaled and oral)I personally think its kinda rediculous how people react to something new and potential......alot of people apparently have a mind set to not see the glass half full.Interesting to see the ages and lifetimes spent living with CF of those both negative and positive toward these potential treatments! Jake
I' Robert and I'm from Montreal, and I have a 4 year old daughter with CF, and I can understand parents and/or kids/adults that has CF, not wanting to get excited about "new"founding regarding treatment of CF. As a parent, and I did not have any relative close or far that has CF, so it came as a shock when we learned that Sydney Olivia had CF, I'm looking forward for any kind of news regarding treatment or cure (wish) for CF.As for this topic for curry spice, I know I read that Head department of John Hopkins hospital in Baltimore said that it was promissing, but (that word again), will need to be tested before saying anything about it. I've read also that they would test it on CF patients to see if, 1st it's really working and 2nd for side effect.If John Hopkins hospital says it's promissing, it must mean something wright ?hopefull DadRobert.
AbsintheSorrow
New member
If John Hopkins hospital says it's promising, it <i>can</i> mean something.
Hi, Im a 27 year old male with CF. I was excited about the news of the curcumin discovery, but at the same time stayed skeptical. But what I have done is researched through health stores and other online places to by straight curcumin extract. It does come in a safe organic supplement sold right in the mall. I have purchased a bottle of it and have been taking two daily. I dont find it a problem to try, its only organic and not chemicalled. So I believe it is safe. I have heard already of other cf'ers going and buying the spice to cook with, I went straight for the compound source. I will try and keep you updated but I have only taken the supplement for a few days now. So i think it will be at least a month or so to notice anything, IF anything. I kinda feel like a lab rat, but its worth the shot. I have watched close friends die of cf, and go through transplants. Ill fight this at any cost.Chad
AbsintheSorrow
New member
I just want to point out that because it's all natural doesn't mean it's safe. If it has no side effects, that's good. But ephedra was also "natural and completely safe." When now we know that it was basically natural speed. Natural, but not safe.
You are absolutley right about the ephedra. I did a little investigation on the curcumin. Another reason I chose to go ahead and take it was if it is in a regular spice, and it had bad side affects, I figured that it would have been reported by now with its daily use in the kitchen. But we will see! Staying positive is the best way I figure. I was skeptical a long time ago when they said tobramycyn was the biggest thing in antibiotics. But wow my body took to it well. Began clearing things from my lungs I didnt even knew existed. And I think i read on this messege board about it only working in the GI. I read an article that the function of curcumin helped release the gene to do its proper job of keeping mucus thinned. I would imagine that is directed at the lungs too as well?Chad
ChadI am interested in the brand of Curcumin you are buying. I bought some Nature's Plus....advertised as Turmeric 95% Curcumin.You said that you bought the Curcumin Extract? I have read that Curcumin Extract is an oil?Any info would be great.You can email me if that would be okJakeyacobius@yahoo.com
JakeThere is a company called Life Extension which sells curcumin extract at a claimed 95% purity. They also have an additive called Bioprene (isolated from Pepper) which is supposed to help absorption of the curcumin. Their website is www.lef.org, just search for curcumin. I'm a CF sufferer from Australia and have been doing post graduate studies in molecular genetics and I know that few research papers have the scientific calibre required to be published not only in 'Science' but also 'New Scientist'. The paper states that the concentration utilised in the study ie 45mg/kg of body weight was adopted from previous papers which concluded that humans could tolerate large doses of the compound. In terms of clinical results of the CFTR mouse, not even phenylbutarate or gene therapy achieved the same level of incresed Cl- ion transport shown in this study. Whether anything comes of this research is unknown, but its one of the few times, where the individual can most likely safely test things for themselves. It has to be remembered though, that the delta F508 mutation only causes partial defection of the CFTR protein, hence, if it can escape the chaperone proteins which bind and destroy it, it theoretically can still perform its role as a Cl- ion transporter. Thats why the complete homzygous knockout mice showed no signs of improvement because the CFTR protein is completely non-functional. This suggests that the curcumin may not work for people whose CF mutation causes a complete truncation of the CFTR protein. Brad.
Brad,Thanks for some technical background. I thought even heterozygous Delta405F and another mutation would benefit because it would restore or at least deliver the CTFR blocked by this mutation, restoring CTFR functions to carrier levels. I may be mistaken and there may not be enough information out yet to make this disclaimer. When you are talking about people without CTFR function are you referring to those that are homozygous or heterozygous "stop" mutations? Because if its only people without the Delta405F gene that don't benefit, we are talking about a very small population.
My understanding is that the delta F508 mutation is a class II mutation. If that's correct, then, Brad, are you basically saying that those who are homozygous for a class I mutations will not benefit from curcumin but anyone with one or more copies of a class II, III, IV, or V mutation WILL benefit? Therefore, MOST cfers will have some benefit, the degree depending on the severity of their mutation(s)? Thanks for the info.
Jake There should definetly be a benefit for heterzygotes, because CF carriers have only 50% functioning CFTR. The reason this disease is so prolific is because CF carriers have what is called heterozygote advantage, in that it is beneficial to be a carrier because it imbues you with resistance to things such as the bubonic plague and diahrroea related illnesses. The plague wiped out almost half of Europe and obviously certain people had a natural resistance which was 'selected' for. Some scientists think it may also be why as much as 10% of the caucasion population has natural immunity to HIV, which makes sense considering that the bubonic plague did not effect areas of Africa or Asia. The same princple applies to sickle cell anema which effects black africans predominantly. The reason heterozygotes have an advantage over those that are homzygous for this condition is because it provides immunity to malaria, while homozygotes have malformed red blood cells which cause blood clots and strokes. Some CF patients have only 2% pancreatic function and this is sufficent not to require pancreatic enzymes with food. Studies conducted by Brandon Wainwright, one of the guys who helped isolate the CFTR, suggest that perhaps as little as 5 to 10% increased Cl- ion transport would result in clinical benefits. In terms of the class of mutation required to seek a benefit, it must be one in which the CFTR has partial functioning i.e those whose protein can still export Cl- ions if allowed to reach the lung lining. I suspect sufferers with mutations which casue frameshifts which completely truncates the protein, would unlikely derive benefit.Brad
Chanelle, my heart went out to you when I read your letter, I know how you feel, My daughter was 11 months when she was diagosed and she is now 2. I also didn't want to know things because it was to hard. Your not alone, there are good days and bad days, however I can't imagine trading skyler in for 12 healthy ones. Keep your chin up and don't be afraid to rely on friends and family for support. Rachel