Search results

and yet they refer to it as the "Chinese Coronavirus?"

Trikafta My daughter who is now 26 has a class1 and 2 mutation and she went undiagnosed till 10 years of age. She started showing symptoms at about 8 1/2 years old though but despite many worried trips to the pediatrician she went undiagnosed! She is currently in the VX trial that was just...

Hello! Just saw this. My daughter also has this same gene which is very common in the Swiss population. Her other gene is also delta508. She was diagnosed at 10 years old. She really did not exhibit symptoms till she was about 8 1/2. She started losing weight and coughing at night. I must have...

My daughter used a "wabi baby" (used for baby bottles) and it worked perfect. You had to buy sterile water which was a pain but otherwise, its quiet, ez to use and you can keep the items stored in it till you use instead of laying on a counter. It has an automatic shut off.

Vertex received millions of dollars from the CF Foundation for years to fund their research. Now, they charge the CF community outrageous prices for the drug. :(

my daughter is taking NAC Sustain by Jarrow 600 mg twice a day. Though her lung function stayed consistent, no better no worse, the first blood work she had after starting it showed a dramatic decrease in her inflammation markers. This was the only thing different in her regiment. We don't...

Isn't that the truth? At least we are in a time when their is more hope than ever before. Stay strong. >>>HUG<<<<from one worried parent to another.

I have also worried about this. I was assured that there is a filter that blocks out 99.9% ......of course every time my daughter is using it I keep thinking about that .01%. I fear the clinic for her but really feel the hospital is where you get the most bugs. Has anyone else asked? Just...

It is my understanding that there is definitely a loop hole that would allow states to reinstate the lifetime caps. I found this by googling and read different sources. Obamacare was not perfect but a step in the right direction. Its a shame that Congress will not work together to come up with...

yes, Scott Gottlieb is a venture capitalist with many financial ties to the pharmaceutical companies and he will do whatever it takes to push these drugs through..,

Yes, i fear we are entering very uncertain times with the corporate world with them already talking about lifting any safeguards and regulations placed on them in the last 8 years. Here we go again...so are they treating Creon like its not a necessary drug? My daughter fights to maintain her...

How do you know it will include protections for those with a preexisting condition? Who will fight it, which house of Congress? I sure hope you are right but this is a huge win for the insurance companies, not the American people.