Recent content by dasjsmum

Please help support us in our campaign to have Kalydeco placed on our PBS - which makes the drug financially accessible to all who need it. It has been under reveiw recently and the PBS committee have deferred their decision in order to discuss further with Vertex. We are running a social...

Ha!! Looks like I have won the longest game in history :)

Sad seeing this post :(

Hi Kalydeco is currently being reviewed by the PBAC (outcome due 23/8/13). Hopefully it will be placed on the PBS. We have an Aussie FB group which is also connected to the CF Ass to lobby for the drug. PS you cant obtain the drug in the manner you're asking about. If you have 40% or less...

Hi There Its been while since I posted here, but I can tell you that Kalydeco absolutely does improve digestion. My son is almost 34 and been pancreatic insufficent since he was 5mths old. He has now been on Kalydeco for 3.5 years (he was in the Ph3 trial for 770 & G551D and was on the actual...

HI All I wanted to let you know that my son who has been on Kalydeco now for three years almost (part of ph3 + now on open lable), had headaches and such when he started. Otherwise he has experienced no adverse side effects, including his liver with ALT levels normalising after starting Kaly...

I cant believe it Tom <img src="i/expressions/face-icon-small-sad.gif" border="0"> So sorry for you all. Poor little fella had such a hard time, it's so unfair.

HI Frank 'People like me?' what do you mean? Actually, I am not making any assumptions, I am speaking about what I am reading on this forum. If there was more information that you sourced from somewhere else regarding that lady you should have shared publically and informed her of where you...

I agree with Bill, this conversation should have been had in privacy. In my opinion Jonothan and Frank could have just left the site without annoucing their intention oand without going into the situation at all. If they had done that noone would have been any the wiser that they had left or...

<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>Havoc</strong></em> Well, this all has been quite an eye-opening experience. I never thought my announcing my leaving would lead to such an outrage and flood of comments and emotions. Rather than accusations and...

Thinking of you Tom, Micah and the family. Sending all the best thoughts your way.

Thanks Imogene for sharing the story of how this site was started, I found the story very interesting. Aside from whatever issues others have I would like to just make a personal comment: I have been a member here for many years and really appreciate the fact that this and other CF sites...

I have a question: Since I live in Australia we have Medicare, what you call a 'socialised health system'. I've been curious since Kalydeco came out, can people with cf in the US who dont have health insurance access Kalydeco? If not, does that mean that there are a large number of people with...

I love you all! Pink Floyd, my all time favourite band! I believe that Dark Side if the Moon is the all time biggest seller - think this is world wide...and was voted album of the century (not sure who by!).

Thanks for that info <img src="i/expressions/face-icon-small-smile.gif" border="0"> You're right with the every day for the rest of your life comment, and we will have to see how it goes long term. I guess you could take it for a year and have six months off etc., (but I cant imagine anyone...