Search results

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ldy</b></i> "Ataluren wasnt desingned to slow down the damage on lungs, but to activate CFTR function." You are exactly on mark!It was thought that it would "correct the defect in X mutations" Patients on the trial have made comments...

Do you know of any smoothie or drink receipe that is overly nutritive and can be made and stored in bulk in the fridge for whenever I get hungry? I really, really hate having to prepare food and think of what to eat and as a result I skip meals every day and can often go a day without a full...

UNCLoveCF : Wow. Your story is scary :S I hope that bad of an episode never happens to me. I'm glad to read though that it seems like you can easily survive such a bad episode. Then again, you have good PFT's. I might not be as lucky if it ever happens. I know a CFer who died of a lung...

<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>dream2live</strong></em> I am currently in the hospital, but this time I went to the hospital that specializes in CF (its a teaching hospital). So far, everyone has been following protocol about gowning up, masking up, etc. The...

You are on the transplant list? I have about the same FEV1, but am not on the transplant list and my SPO2 has been sitting around 92-94 for as long as I can remember (even when I had >37%). I'm curious as to why you are already on the transplant list, if you are. MRSA? I'm especially interested...

Yep! The last time I took Bactrim was over 18 years ago and I had it listed as an allergy in my medical files ever since for the same reason! I think it was given to me by inhalation (possible?) and caused a rash in my face. It looked pretty much like what you are describing from what I remember.

People who tan nicely : Are your vitamin levels alright? <div class="FTQUOTE"><begin quote><em>I found that beta carotene vitamins help.</end quote> </em>My post above you seems to point to that! I know that vitamin A is one of the vitamins which tends to be a bit low in my blood levels. I...

It a principle of precaution. They will give it to you only if you are sick enough that the benefits will outweigh the risks of giving you a drug that may have unintended effects. Of course it is dumb in the case of drugs like Kalydeco, but if it were another type of drug like for example, a new...

<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>saveferris2009</strong></em> We are so many biotech companies in the US? Why does so much drug development occur here? Why are clinical trials conducted here? Has anyone wondered the reasons to all of these questions? Why...

Unwarranted American patriotism is like nails on a blackboard to me. Especially when it comes to health care and economy. So are people who cannot make the difference between a concept and its implementation. If my washing machine sucks because it's designed in a way that clothes are difficult...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dramamama</b></i> <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=""></end quote> This is awesome. I have your...

Thank you! This is great! Joining right now.

GenH : It seems to be something like it. Reading the conclusion of this study shows that it might be very difficult for someone without the right mutation to get Kalydeco because the SAP makes decisions based on evidence. Quoting : <a...

<p class="strong">I just called Vertex. The representative told me that we can have access to Kalydeco in Canada through our Named Patient Program, which is called "Special Access Programme" <p class="strong">Quoting Health Canada : "<em>The Special Access Programme (SAP) provides access to...

I just called! And I think I come back with good news! So, the Vertex representative told me that we can have access to Kalydeco through our Named Patient Program, which here is called "Special Access Programme". Quoting Health Canada : "The Special Access Programme (SAP) provides access to...

Don't listen to people telling you that it's a lack of discipline. It can be something completely different. For example, my mom has always been so obsessive with my CF, everything was always about my CF, she saw me more for my disease than for who I was as a person. It was oppressive. She was...

I thought that maybe it had something to do with vitamin D deficiency, as I think that vitamin D is required to produce melanin, so people with vitamin D deficiency may have a hard time producing melanin, resulting in more sunburns. Google has yielded interesting results relating Vitamin D...

<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>kayers3</strong></em> Can't argue with all the above, but here are some things I appreciate: -When I have a coughing fit in public, my friends/family will often tell passerby "don't worry, she's fine" or the like. This prevents...

Just a note, because I find this to be kind of a very useless, inaccurate and undeserved stab in socialized medicine : Socialized medicine has nothing to do with the ability or inability to use drugs off label. Socialized medicine or not, a drug still needs to go through an approval process with...

Yeah, but what I want to know is about CF related increase in risks of sunburns, not something related with quinolones or any other drug. THANK YOU VERY MUCH mr/mrs administrator for the confusion.