Topics

Leaky gut
My question is about an illness named leaky gut. My question was if this could not also frequently occur in patients with CF, especially if they are taking antibiotics frequently. And if yes, would a gluten-free nutrition help also? Many thanks for your answer.
13.05.2016
Private swimming pool
Dear expert, We are Belgians living in Portugal. Our son is 18 months old and has CF. What is your opinion about CF and a private pool (not with friends but one which we maintain ourselves)? Is a pool with saltwater preferable (partly chlorine) or one with only chlorine? Or do you recommend none of them? I already read some questions about pools, but not about the difference between saltwater pools and chlorine pools. Thanks in advance. Regards, L.
13.05.2016
Salt for nose cleaning
Hello, I'm 35 and I have cystic fibrosis. I have been cleaning my nose for 8 months with the rhino horn device. This allows nose cleaning with a very large amount of water and I find it very effective. Besides, I have less infection than before. To make it simple, I use warm tap water and table salt. But I was recently told that table salt, in the long run, would damage nasal walls and kill the cells of smell. If this is confirmed, is there another less aggressive salt? (I have heard of iodine-free salt, fluoride-free salt or salt to replenish but I admit not knowing what to take). Finally I wish to continue, where possible, to use warm tap water and add salt instead of a sodium chloride solution, to be heated in the microwave for convenience. Thank you
13.05.2016
Transmission risk
Hello We are expecting a boy. As part of prenatal diagnosis, the father and I made blood screening for cystic fibrosis. Initially, the results came back negative (with the set of the thirty most common mutations). However, this Friday we learned I was carrying an unknown mutation of the gene cftr (not referenced and which we do not know if pathogenic). On the side of dad, pushed test was also made clear and negative. The lab concluded that a risk of 1/200 for the baby. This result seems very high to the extent that the father is healthy and I confess that 37sa this type of result is very worrying. Thank you in advance for lighting you can give us
13.05.2016
Diabetes
Hello, Have pancreatic sufficient patients also an increased risk of diabetes? Will so much prevention in form of a healthy diet be really working or is the cause purely genetic and nothing can be done? Thank you
13.05.2016
Orkambi®
Good evening, I have read the side effects of Orkambi®. What are the results of studies in countries that prescribe this treatment for a couple of years now (regarding these side effects)? Best wishes
13.05.2016
Cayston® and Pregnancy
Hello, Have we got data regarding Cayston® and pregnancy? Especially during the 1st 4 months? Thank you
11.05.2016
MUTATION c.1680-886A>G (remainder)
Hello, Thank you for your reply on the mutation c.1680-886A> G. It is therefore a splicing mutation and not a "nonsense" mutation. However, since due to reading frameshift it leads to a stop codon, can we assume that patients with this mutation would be eligibe to ataluren (PTC124)? Thank you in advance for your answer.
11.05.2016
MUTATION c.1680-886A>G
Hello, Could you give me information about the mutation c.1680-886A> G? Does it induce a stop-codon? Thank you in advance.
11.05.2016
Living at the seaside
Hello, Is living at the seaside providing any benefits or otherwise a risk of aggravation for a CF patient? Thank you
11.05.2016
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