ecorn-cf: App. question list

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Staphylococcus aureus: I am 29 years old; I am coumpound heterozygous for deltaF508 and R347P mutations. I was chronically infected by Staphylococcus aureus and took Minocycline since 2006, because of frequent exacerbations and recurrent use of intravenous antibiotic courses. With this treatment I feel very well. Recently, my physician has changed and he stopped my treatment because there wasn't Staphylococcus aureus in my sputum anymore. I am very worried because my previous doctor has recommended to maintain the treatment for all my life!! My question is so: is it a good idea to stop the treatment?; 11.06.2012

perspiration odor: Hello, I have CF with significant symptoms recently (2789 5G coupled with D508) I'm 50. I noticed recently a change in odor of my sweat: the soap is not enough to stop it. Previously I was sweating a lot, but was almost odorless. Do you think this much stronger smell means worsening of the disease? And also the fact that I barely get warm and sweat a lot, this can change in an hour, despite a fairly stable room temperature? This idea of increasing problem worries me a lot, and if it is not associated, thank you to say it. And if it does, thank you also to tell me. Do CF people sweat more than others? Could this be related to a peripheral temperature of the body abnormally cold? THANK YOU to be there to inform us, and answer me. Cordially.; 11.06.2012

chronic fatique: Hello, I'm 34 and I have cystic fibrosis, with a FEV1 of about 40%. I sleep at least 10 hours a night and I often need to recover in the day also. So I spend several days a week to sleep. Fatigue is mutli-factorial and complex, but I wonder if those adults with cystic fibrosis suffer from it often and much. Thank you for your response.; 11.06.2012

Meveol®: Hello I have a 4 month old baby suffering from cystic fibrosis. I have heard about Meveol® as a treatment that would be quite effective against recurrent infections. Could you give me some news regarding the research about this drug. Will this drug be available for children? Thanks in advance; 11.06.2012

recovery of rainwater: Hello, My three year old child has CF and has already been contaminated by the P. aeruginosa. In my job, my accommodation is allocated. My accommodation is new (not yet delivered, but on the way). But I am a little concerned: there is a huge rainwater tank which feeds an outside faucet and toilet. (No possibility to modify the installation). Should I deny this housing or do you think that the risk of contamination is low? (Subject not to have extended aerosol in the toilet, of course). Thank you for the answer and for your answers in general!; 11.06.2012

Mutation 2789+5G A: Hello, My two year old son has this mutation, coupled with deltaF508. What can you tell me about this association? Thanking you,; 11.06.2012

Sand box: I often read that a sand box is full of bacteria. Is a sand box more dangerous to a child with CF than a child without CF? A worried mother; 11.06.2012

outdoor trampoline: Hello, We have the project to buy a trampoline for my daughter who has cystic fibrosis. I have a question about the fact that it is outside, since too large for the interior. With rain water that can get stuck in the walls of protection ... is it a problem because of the Pseudomonas aeruginosa? Thank you for your understanding; 05.06.2012

Cystic Fibrosis: I would like to know whether CF can already be diagnosed when the mother is still pregnant.; 05.06.2012

Cystic Fibrosis-microorganisms: Dear madam/sir, I would like to know which organisms are present when somebody suffers from cystic fibrosis. Thank you!; 05.06.2012