ecorn-cf: App. question list

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Topics

water cure (spa): Hello, I have CF, with late diagnosis, and ENT symptoms (chronic sinusitis and polyps operated thrice) and bronchial symptoms. Are water cures indicated and benefical for CF. Thanks for your reply; 22.02.2011

cystic fibrosis and menopause: Hello, I was diagnosed at 50 years old with the G551D and Q1476X mutations. I had an early menopause at age 26. Is-it related to cystic fibrosis? Thank you for your reply.; 22.02.2011

Aquarium: Dear expert team, our son wants absolutely an aquarium, which I do refuse vehemently because of the risk of germs. As he sticks to his guns and my wife starts to fall into despair, I would like to ask you for help. How do you judge the risk for a CF patient? Many thanks; 22.02.2011

Genetic testing: Dear ladies and gentlemen, for our daughter, there had been the suspicion of CF, after the third test it could be excluded. We are planning a child at the moment, can we get tested in advance that we can exclude, better say if our chances for a healthy baby are good? Many thanks; 22.02.2011

swimming pool: Hello, My 11-year-old daughter has cystic fibrosis. Our CF centre does not recommend going to swimming pools. Now, on the website of Vaincre la Mucovisicidose in France, it seems that swimming is encouraged for children. Can she go for example to a hotel swimming pool ? Until now she always bathed in the sea or in the lakes. What are the risks in swimming pool?; 22.02.2011

Oxygen supplementation at night: Hello, since the end of November I am taking oxygen at night (1.5-2l) and have several questions concerning this topic. 1. Which kind of water should I use? Distilled water or is demineralized water also sufficient? I heard also about tap water with salt and about that I do not need a humidification at all with an amount of 1.5-2 l. 2. How often do I have to change the water in the tank? 3. How do I clean the tank and how often? 4. How often do I have to change the tube? 5. How often do I have to change the tank? 6. Do I get the water reimbursed by the health insurance? Questions over questions, probably you could help me. Many thanks in advance.; 21.02.2011

Maintenance of e-flow: We were advised to use the product “ummonium” to disinfect the nebulizer (reservoir + mesh). On the other hand we do not hear that this product is not being recommended for use in several CF reference centers. Why not? Has this product been tested for efficacy? Many people report problems with maintenance of e-flow reservoir and mesh. We use ummonium since a long time and never had problems. On the contrary our reservoir and mesh last one full year.; 21.02.2011

Animals and children with CF: Can children with CF own a pet (dog, cat, fish, hamster, etc)? Can they come in contact with other animals during our vacation time?; 21.02.2011

Lungs or pancreas - clinical trials: Is there anything for the mutations ending in ...X. When will it be available in Greece? Does it concern the lungs or the pancreas. Thank you!; 18.02.2011

CF mutations: Good evening! I have a baby boy six months old. When he was 3 days old he was operated for ileus due to meconium. The surgery went quiet well and immediately after the baby was tested for cf and two mutations were found (c.621+1G>T/p.G85E). Up to now he is very well and suffers only from pancreatic insufficiency. Are these mutations connected only with pancreatic insufficiency, or with something else as well? Is it severe?; 18.02.2011