Back from Denver National Jewish.....(Kalydeco trial)
Hey Everyone!
I know there were a few people interested, so I decided to start my own thread about my Denver experience. :)
Sooo.... I made it to Denver on Tuesday to be screened for the Kalydeco trial. For those who don't know, it is the trial for residual function mutations. In order to get in, one must meet at least one of 3 criteria: A sweat test under 80, pancreatic sufficient, or diagnosed at or after age 12. We know that I don't meet the second two, so I can only get in if my sweat test comes in at or under 80. It was 83 when I was diagnosed in 1981, so it's really questionable. However, they seemed optimisti...
Source: Cystic Fibrosis CFTR Modulation and Gene Therapy Forum - September 6, 2013 Category: Respiratory Medicine Authors: triples15 Tags: CFTR Modulation and Gene Therapy Talk Source Type: forums
Undiagnosed Flank Pain 5months
Discussion Boards)
Source: MD Health Forum - Medical Discussion Boards - April 14, 2013 Category: Consumer Health Advice Authors: Marino209 Tags: Family Doctor Source Type: forums
Flavon
group has finaly opened an office in the U.S. - so to those that wished to purchase - it will be opened soon - I will send a link once I get it.
Asia - after over ayear on taking flavon kids and green has had a runnng nose once, her staph never returned and still has natural flora - however its from her throat. Her elastaze has jumped from 420 to 530 and - finally - she has no progress in lungs comerated to last year. She always had some little progress.
I cannot say its flavon - I can only say I believe taking it made a difference in her health. Our cf specialist says its a great idea and that flavonoids make capilary mo...
Source: Cystic Fibrosis Alternative Medicine Forum - April 18, 2012 Category: Respiratory Medicine Authors: AleksandraKaczynska Tags: Alternative Medicine Source Type: forums
