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So this is it. CysticLife.org is finally open to the public and we couldn't be more excited. After months of hard work by a great team (if we do say so ourselves) our dream is finally a reality...sort of. Let me explain.   The site design has been made. The pages are coded. ...

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Treatments
so my mom loves finding new things for me to try that aren't antibiotics and about a month ago she got me oil of oregano... During my november appointment I cultured pseudomonas and something with a st (can't remember right now).. but on the first of january I started putting a drop of it under my t...

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5775 Views ● 5 Comments
Health
I want to share with you all something i learned at my doctor visit a while back about the hypertonic saline solution.  It always struck me funny that i was paying for saltwater.  I had this thought in the back of my head, "Can't you just make it on your own?  Something about getting ...

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4299 Views ● 18 Comments
Exercise
I knew that would get your attention! Let me start by saying that by some grace of God or Universe or Source or whatever you want to call it, despite being a DD508, I have decent PFT's at age 51. I know that part of that is because I am now and always have been (since age 13 anyway) a total exerci...

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questions
4003 Views ● 23 Comments
Cystic Fibrosis
I am doing a speech on cystic fibrosis for a college class so I was hoping to get some other people's input so that my speech isnt bias. I would really appriciate if anyone can help by answering this survey before Wednsday March, 28 becuase thats the day of my speech. Thanks again! =) 1. At what ...

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I stumbled across this post in a 'ask a genetisist website', when I was looking up a friends M470V strain, which currently is considered non-disease causing....VERY interesting how the level of the chloride determines what is effected in the body!  I swear, Cystic Fibrosis will have a differe...

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questions
3631 Views ● 11 Comments
Hospital Stays
So today is the day that we should be in Kona, Hawaii for my son Conner's Make a Wish trip. But guess where we are instead? Enjoying the first (of many i'm sure) admit of the new year. yeah, happy new year! He's been on IV's 2 weeks now and for the last 5 days has been spiking 104...

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Cystic Fibrosis
So I've been on kalydeco a week and OMG I just posted the most amazing update to me blog www.insidecf.blogspot.com Please check it out and spread the news. I am soo amazed. If you are taking kalydeco I wanna know how you are doing, so PLEASE tell me. Email, facebook, text whatever - jsut let ...

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Tips and Tricks
I know that I saw some posts in the past about eczema and wanting to rave about Hill Moisture Riser. My daughter, w/o cf, has terrible eczema and we try everything to keep it under control. My pediatrician just recommended this product to us and sent us home with a bunch of samples. Holy soft skin -...

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questions
3163 Views ● 8 Comments
Food and Nutrition
So here's my quick shout out to what has really helped me lately and completely changed my life. So three months ago I stumbled across a book called the paleo solution. I hvae always been fascinated with diet/nutrition. I never had a problem eating or keeping weight on but I feel like there is ...

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THE BIG NEWS The U.S. Food and Drug Administration (FDA) has approved KALYDECOTM (ivacaftor), the first medicine to treat the underlying cause of cystic fibrosis (CF), a rare, genetic disease. KALYDECO (kuh-LYE-deh-koh) is approved for people with CF ages 6 and older who have at least one copy of...

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