Topics

Reliability of the sweat test
My 6 years old son has been diagnosed with bronchectasis. The chlild, apart from a chronic cough, does not have any other symptoms and is developing normally. Our doctor recommended for the child to have a sweat test, which was negative. Does the sweat test suffice to safley exlcude CF?
04.10.2011
Air conditioning and CF
When I start using the air conditiong at home my child has an exarcebation of pseudomonas? Is it a random coincidence? What other factor may play a role? The technician disinfected the unit. How can I avoid pseudomonas in general?
04.10.2011
Impact of Pseudomonas aeruginosa and treatment strategies
Hello We are the parents of a 2 years old patient with CF, infected by Pseudomonas aeruginosa since he was 6 months old. We would like to know whether it’s the case of many patients on France? Despite different treatment strategies, our kid can’t get rid of this bacteria; our physician says that it is a chronic colonization and that our kid won’t ever get rid of it. He also says that even if the CF adults chronically colonized are usually less healthy, some of them are doing well. However, we have met parents whose children could have get rid of it and we heard about “infant pseudomonas”, non-mucoid. We are looking for some references, statistical data to help to define strategies with our CF center: median age of chronic colonization, correlation with survival, relevance of a first eradication, eradication possibility when the colonization started early in childhood. Are there studies in other countries and where can we found them? Thank you
04.10.2011
Boyfriend HIV positive
Hello, I had a lung transplant nine months ago. Now I have fallen in love and my boyfriend is HIV positive. What do we have to keep in mind, and what are the risks? Many thanks for your answer!
04.10.2011
Cure for CF
Most information sources about CF articles say that there is no cure and that the disease leads to deat. What do you think?
04.10.2011
DF508 carrier
I am the mother of a 2,5 years old daughter. We know that she is a carrier of the DF508 mutation, as am I. My husband has been screened and is not a carrier for all the known mutations. Should I be worried about something? She attends kindergarten for the first time this year and has a runny nose all the time. Till she started attending she never had anything, except for otitis once. Thank you!
04.10.2011
Doubtful sweat tests
I have two daughters, 4 and 6 years old. Both are carriers of the W1282X CF, mutation, as I am, whilst my husband is negative. Their health in general is good. The values of their sweat tests are borderline. The older one has been tested 3 times (values 25.2-55.5-38.3), and the younger one twice (values 42.1-55.9). I am really worried and I do not know if I must have them tested in some other way. Could these elevated values be attributed to them being carrriers?
04.10.2011
f508del/g576A
My child carries the mutations f508del/g576A. The genetist, that traced them, has informed us that it is an atypical form of the disease, and the only probable issue may be a fertility problem. He did not recommend us to take any further action and he told us we would not have found it out if we did not look into it.
04.10.2011
altitude
Hello, My boy would normally participate in a mountain trip with his class this winter. The children normally go to the Dolomites, Italy, to downhill skiing with a high altitude (1800 m +). Are there risks for my 12 years old child ? Is he susceptible to have breathing problems? If so, which ones and how should we react to ? I admit that it scares me ... In advance thank you for your reply. And thank you for your dedication to this site.
29.09.2011
Exercise and cystic fibrosis
is there documentation about physical activity and cystic fibrosis?
29.09.2011
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