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Hi Craig, You'll want to contact the Scottish Medicines Consortium. Express in writing and voice (IMHO) how important and life saving this drug is for your family. I would send it certified mail to show you want this attended to ASAP! It seems that once the EU medication review board approves...

I was a daily bleeder then in 2008 I got an embolization. I did not qualify for the embolization due to one of the 5 (or is it 6) established reasons to get a BAE but petitioned to get it for a QOL factor. I have since started Vertex 770 and now have no hemoptysis. I think the BAE and the Kaly...

I was a daily bleeder then in 2008 I got an embolization. I did not qualify for the embolization due to one of the 5 (or is it 6) established reasons to get a BAE but petitioned to get it for a QOL factor. I have since started Vertex 770 and now have no hemoptysis. I think the BAE and the Kaly...

Hi, Thanks for sharing the video! I enjoyed seeing a video of someone other than a female or a child. You look great...keep up the great work with your weight, tone and lung health. Your voice hasn't changed much to be the cf voice yet. I only watched a few minutes as my browser was not keeping...

Hi, Thanks for sharing the video! I enjoyed seeing a video of someone other than a female or a child. You look great...keep up the great work with your weight, tone and lung health. Your voice hasn't changed much to be the cf voice yet. I only watched a few minutes as my browser was not keeping...

Yes I participate out of Philadephia but could have gone to Boston also. I live between both...Phila is a little further but I know Phila and the clinic because I used to live there so chose it. Contact the research coordinator who is handling that specific trial at any center you would be...

Yes I participate out of Philadephia but could have gone to Boston also. I live between both...Phila is a little further but I know Phila and the clinic because I used to live there so chose it. Contact the research coordinator who is handling that specific trial at any center you would be...

Just submerge the head in water while at the park. Once you are back in your room, clean the head and the plastic pieces in warm water with dishsoap (I stick with Sunlight) Don't use antibacterial or creamy soaps! Then sterilize. I do the same thing at home. I have a rubbermaid container that I...

Just submerge the head in water while at the park. Once you are back in your room, clean the head and the plastic pieces in warm water with dishsoap (I stick with Sunlight) Don't use antibacterial or creamy soaps! Then sterilize. I do the same thing at home. I have a rubbermaid container that I...

Big Shot by Billy Joel...ever since I was little. It's more my theme song about my triumph in life not expressive of a battle with cf. I remember the first time it really got in my head. It mostly comes in when I am just totally rockin' what I'm doing. I was about 5 or 6 years old and was...

I have severe red blotchy and swollen areas during my redman's syndrome which by the way is a side effect not a reaction. I experience it for 1-3 days and only during the actual infusion time. The first two days I infuse over 2 hrs then I return to the regular infusion rate of 1 hr. I prefer to...

I have severe red blotchy and swollen areas during my redman's syndrome which by the way is a side effect not a reaction. I experience it for 1-3 days and only during the actual infusion time. The first two days I infuse over 2 hrs then I return to the regular infusion rate of 1 hr. I prefer to...

Carey, Prayers to your little girl & her sibs to have a healthy, happy remainder of the winter.

Carey, Prayers to your little girl & her sibs to have a healthy, happy remainder of the winter.

I got pregnant on our first month of trying as Scarlett mentioned. I had no interventions. I am DF508 and G551D. I never had difficulty maintaining weight until I was pregnant. I had to eat nearly 5000 cal a day to gain the weight I wanted which came to 26 PROUD lbs. I felt nutritionally strong...

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Where are you located? I'd suggest you go to another nearby cf center for a second opinion. Treatment might not be best but I understand your conflict of interest concern.

Where are you located? I'd suggest you go to another nearby cf center for a second opinion. Treatment might not be best but I understand your conflict of interest concern.

Thanks for sharing this Frank. I voted and will share with with my Facebook network as well as my Great Strides fundraisers. Do you know when voting ends? Can we vote each day? How are you feeling?

Thanks for sharing this Frank. I voted and will share with with my Facebook network as well as my Great Strides fundraisers. Do you know when voting ends? Can we vote each day? How are you feeling?