ecorn-cf: App. question list

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Probability of outbreak: Dear experts, I got the information yesterday that in case of my dauhgter (7 months) 33 mutated genes of rh117 have been detected. Test (OLA POR). She has been named as a healthy carrier of the gene defect. She is told to do a sweat test now. What does that mean? Can this illness break out? Or only if both parents have inherited this defective gene? Or is only one parent necessary to evoke the illness to the child? (I do not know at the moment, if we both parents are carrier or only one of us). I only find information that both parents have to be carrier for the child is going to suffer from the illness and is not only a carrier. In case the sweat test will be positive, does that mean that she is already suffering from CF or can she only be a healthy carrier in spite of this? How is it really? I am very afraid and would welcome a quick answer. Thank you.; 15.09.2008

Tablets, for boy age 3 years, suffering from Cystic Fibrosis: Q/A not relevant for the European Archive as it dealed with the special availibility of two drugs in the UK.; 11.09.2008

adherence of patient to treatment: hello my name iS DANITZA MADERO AN I AM PEDIATRIC PULMONOLOGIST OF BOGOTA COLOMBIA , I NEED TO KNOW STUDIES ABOUT ADHERENCE TO TREATMENT TO CYSTIC FIBROSIS . I will hope your a answer thanks , DANITZA MADERO; 09.09.2008

Sweat chloride test: Hello. I work at the Pediatric department in Handlova Hospital, Slovakia. We have an old device for chlorides detection in sweat and I can not find any offer for a new one. I ask You for any help and an address where we can buy a new advice for pilocarpine iontophoresis. If it would be possible add price as well. Thank You in advance for answer. pmifek@szm.sk; 08.09.2008

Lithuanian Cystic Fibrosis Society: I am new president of Lithuanian Cystic Fibrosis Society. My name is Vilma Narkuniene. All who want to take part in activity of Lithuanina Cystic Fibrosis Society or keep company, please write or call for me by phone 8 684 14303.; 20.08.2008

discussion: I would like to keep in company with parents who have children with cystic fibrosis.; 20.08.2008

Hypertonic saline: Can you explain me what the advantages and/or disadvantages are of the inhaled hypertonic saline in cystic fibrosis patients. Some patients show good results, other far less. Could you explain me what the basis is of this different response ? Thanks.; 18.08.2008

infection: I have a CF patient, 18 year old, who has Pansinusitis and only Streptococcus agalactiae in right and left sinus, do you know if this Streptococcus is pathogenic for this patients and is it necessary treat them?; 01.08.2008

CF: I am an ex UU physio graduate presently working in an acute hospital in Suffolk. I am treating a teenager with Cystic Fibrosis. The patient has reached the stage where they have become quite depressed about their life expectancy and the limitations they think it may have on their life and now resisting physio. The patient's lung functions have deteriorated a little, however, not as much as the patient perceives. I think it would be beneficial to have an objective outcome measure for the patient in an exercise environment, not just facts on a graph. I remember when I was at UU you were working on the Modified Shuttle Test for this patient group! I was wondering where I could gain a copy of this and the supporting information for it? Any guidance you could give would be very much appreciated! Kind regards Serena; 01.08.2008