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Just wanted to know what some of you do to raise awareness about Cystic Fibrosis. Have you ever organized any fundraisers and such? Just trying to get some ideas. The last fundraiser I donated heavily to was a girl with cf who had extremely long hair and we donated money for every inch that was...

In looking through some past posts, I see that a lot of the women on here are taking some form of birth control. I just wanted to inform people that birth control methods such as <b>IUDs, Birth Control Pills, Plan B, Depo-Provera (shots), The Patch (Ortho Evra), The Hormonal Vaginal...

A while ago admitted to the hospital and they provided complimentary mouth wash in a small bottle. When I looked at the back of the bottle it had a warning that said; "this product is not intended for use in Cystic Fibrosis Patients" I remembered an article where they found B. Cepacia in some...

I was looking at some old posts concerning Oregano Oil and I was shocked to see some posts in which pregnant women were thinking of taking this substance. I did some research and found that taking Oregano Oil while pregnant can cause major harm or even cause the death of your unborn baby. It is...

I was looking at some old posts concerning Oregano Oil and I was shocked to see some posts in which pregnant women were thinking of taking this substance. I did some research and found that taking Oregano Oil while pregnant can cause major harm or even cause the death of your unborn baby. It...

I just wanted to relate my terrible experience with Oregano Oil in the hopes that another person wont make the same mistake. I started nebulizing Super Strength Oregano Oil a while back, I also took the pills and put drops under my tongue and in my tea in the hopes it would help my CF. Shortly...

I just wanted to relate my terrible experience with Oregano Oil in the hopes that another person wont make the same mistake. I started nebulizing Super Strength Oregano Oil a while back, I also took the pills and put drops under my tongue and in my tea in the hopes it would help my CF...

A while back I was admitted to the hospital and they provided complimentary mouth wash in a small bottle. When I looked at the back of the small bottle it had a warning that said; "this product is not intended for use in Cystic Fibrosis Patients" I remembered an article where they found B...

A while back I was admitted to the hospital and they provided complimentary mouth wash in a small bottle. When I looked at the back of the small bottle it had a warning that said; "this product is not intended for use in Cystic Fibrosis Patients" I remembered an article where they found B...

I have recently learned that distilled water may contain B. Cepacia. I would strongly recommend <b>NOT</b> using distilled water at all. Here is an article from 2005 mentioning B. Cepacia in distilled water:<a target=_blank class=ftalternatingbarlinklarge...

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This video brought tears to my eyes. Seeing her so happy is just so wonderful and inspirational. <a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=r7D0DEUSOUc">http://www.youtube.com/watch?v=r7D0DEUSOUc</a>

VX-770 is a drug that works in much the same way as PTC-124. It works by correcting the underlying Cf defect for certain mutations. I have been told I qualify for the trials and I was wondering if anyone else has been asked to participate in the Phase II trials.

If anyone has any experience using the Frequencer (until recently only available in Canada) please share it! I contacted the company and the machine costs $12,000 and you need a prescription. I'll pay the money if others have had positive results using the device I just want to know if it is...

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During my recent Clinic visit my CF doctor informed me of the dangers of using distilled water. He informed me that I should in no way use-distilled water for the cleansing of nebulizer (sp?) parts nor should it be used in conjunction with my oxygen machine. He explained to me the risk of...

This has got to be the biggest discovery since they found the CF gene! <a target=_blank class=ftalternatingbarlinklarge href="http://www.hopkinsmedicine.org/Press_releases/2006/06_29_06.html">http://www.hopkinsmedicine.org...ses/2006/06_29_06.html</a>

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