So im wondering, how do you live?
Since I feel like im just surviving lately and not able to really live at all since my desease always keeps getting in the way of what ever I do.
I dont know how to deal with it.
I feel frustrated because all these knew medicines are comming out, that could actually be very helpful and wayy wayy better than what We and I have now. but it feels like a lifetime for these medicines to arrive. And become available.
Big News today from the Cystic Fibrosis Foundation who just sold its drug royalty rights for $3.3 Billion to Royalty Pharma. The CFF plans to reinvest the money into new research efforts. “These new funds give us a tremendous opportunity to supercharge our efforts to develop lifesaving new therapies and pursue opportunities to find a permanent cure", said Robert J. Beall, chief executive officer of the CFF.
Official press release:
For anyone who has hidden under a rock for the last week, I'd like to draw your attention to this.
For those of you who don't feel inclined to read it allow me to summarise.
Jon Snow is a reporter for channel 4. He broke the above news story via his blog and followed up with a report on channel 4 news and it sent the majority of the CF community
Updated 11-16-2014 at 07:21 AM by Sophiesmum
You know how you can become comfortable with something being there whether you like it or not?
That's sort of how I feel with some of Sophies lung invaders.
I know that sounds utterly ridiculous and I kind of agree sort of, but let me explain.
Sophie has grown Mr P (pseudomonas) since she was about 4 months old and we know how to deal with it. She has daily nebs to keep it calm and IVs every year to proper sedate it. If she becomes unwell
Electronic patch technology is rapidly gaining momentum in the medical device research arena. By analyzing sweat, an electronic patch maybe able to diagnose cystic fibrosis and may one day be used for monitoring blood glucose levels for diagnosis and treatment of diabetes.
The new patch-type technology is being developed by researchers at the University of Cincinnati and is placed on the subject’s skin. The device consists of a multilayer structure, which is designed to draw fluid from
Updated 11-01-2014 at 01:56 PM by ChrisBaldwin