Recent content by dramamama

Hey Guys! I would really encourage any of you with any of these mutations to try and get in the trial. It is a quick trial and then you get the drug.... From the researcher doing the trial: People can call Connie St. Clair directly at 303-270-2517. It really is open to people from around the...

They are the only place doing the trial. Call Connie!

Hey Guys! I would really encourage any of you with any of these mutations to try and get in the trial. It is a quick trial and then you get the drug.... From the researcher doing the trial: People can call Connie St. Clair directly at 303-270-2517. It really is open to people from around the...

Hi all~ About to get a fecal elastase test and was wanting to compare notes on results and mutations. I'm PI (5 creon with meals and CFRD) <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks!

Well, of course, I have to chime in!! Anything alternative... I have had 12 IV ozone (autohemotherapy) in the last 8 weeks, piggy backed with UVA/UVB blood irradiation, follwed by high powered pemf (pulsed electromagnetic field therapy). It works... I had great success with all of this and will...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CyrilCrodius</b></i> Wait, are you the one with Df508/621+1G->T who tried Kalydeco?</end quote> yes <img src="i/expressions/face-icon-small-smile.gif" border="0">

Cheri~ Take him to the University of Colorado emergency room immediately... That is where National Jewish national Jewish admits CF patients. By going to their ER, you will see a CF doctor from National Jewish there... It sounds emergent to me and if I were in your shoes, I wouldn't hesitate to go..

Cheri~ Take him to the University of Colorado emergency room immediately... That is where National Jewish national Jewish admits CF patients. By going to their ER, you will see a CF doctor from National Jewish there... It sounds emergent to me and if I were in your shoes, I wouldn't hesitate to go..

Here is one way to easily email your Representatives regarding this legislation:<a href="http://www.opencongress.org/contact_congress_letters/new?bill=112-s2236&position=support" rel="nofollow nofollow"...

Here is one way to easily email your Representatives regarding this legislation:<a href="http://www.opencongress.org/contact_congress_letters/new?bill=112-s2236&position=support" rel="nofollow nofollow"...

Hi everyone~ I have some crazy news that I think we all need to be aware of as we go forward in our agreement to take the vertex drugs. I had become increasingly concerned about CFers getting sick and experiencing more exacerbations as the vertex drugs were being discontinued after Phase II...

Hi everyone~ I have some crazy news that I think we all need to be aware of as we go forward in our agreement to take the vertex drugs. I had become increasingly concerned about CFers getting sick and experiencing more exacerbations as the vertex drugs were being discontinued after Phase II...

I live in Dallas and have been going to National Jewish for 6 years. I would never go to any other clinic. ever. I had HORRIBLE experiences with the Dallas clinic (the nurses were HORRIBLE at getting back to you (3 days for a hemoptysis issue,) I sat in the hospital at UT SOUTHWESTERN with a...

I live in Dallas and have been going to National Jewish for 6 years. I would never go to any other clinic. ever. I had HORRIBLE experiences with the Dallas clinic (the nurses were HORRIBLE at getting back to you (3 days for a hemoptysis issue,) I sat in the hospital at UT SOUTHWESTERN with a...

This shows what I have been anticipating <img src="i/expressions/face-icon-small-smile.gif" border="0"> We are going to be our own individual studies... study in a box!!! brilliant!!! Thank you Vertex.