Just back from NACFC and getting caught up. Here are some of the main take aways I had from the conference. I would highly suggest watching the plenary session when its available online at CFF website because there was a lot of excellent information about progress being made on all of the different mutations. Here are my notes: Plenary 1: Restoring CFTR function normalizes small bowel PH and improves nutrition and enzyme efficacy. Ivacaftor was well tolerated in ages 2-5 with gating mutations. Also evidence there is a restoring of pancreatic status at ages under 5 (which they didnt think was possible). There is evidence that Ivacaftor works in classes 4 and 5. Lumicafter and Ivacaftor reduces the number of exacerbations. ROBUST CFTR function is the goal for ALL patients. The oldest person with CF in the registry is 82 years old. Other workshops: There are nutritional relationships with IQ status and developmental delays so thats yet another reason why its so critical to get good nutrition early on. Low Vitamin D levels/ deficiency appears to increase the risk factor of developing CF related diabetes. Vit D acts as an anti-inflammatory and an anti-microbial. Negative attention is better than no attention so parents need to be taught how to respond properly to feeding issues. New CFF depression guidelines include annual screening for both parents and patients with CF.
Posted on: Mon, 13 Oct 2014 15:27:11 +0000
Trending Topics
Recently Viewed Topics
© 2015