Topics

Stenotrophomonas maltophilia
What does the finding of Stenotrophomonas maltophilia mean for me as a CF patient? Is there anything to take into account concerning meetings with other CF patients or events other CF patients take part in?
25.07.2016
Quinsair®
Hello, could I get some information about Quinsair® (inhalation of levofloxacin)? Since when it is on the market, how, where and when is can/should be used? Best regards,
25.07.2016
QR-10
Hello Which mutations are concerned by the QR-10 molecule which targets the correct synthesis of CFTR protein? Thank you for your reply
25.07.2016
CTP-656 POTENTIATOR
Hello Could you tell us which company produces the activator CTP-656 and which patients will potentially benefit from this molecule? Thank you for your reply
25.07.2016
Bronchoscopy
Hello, Could you tell me, in the context of cystic fibrosis, indications that lead to consider endoscopy of the lungs in children? Is there an interest for non-expectorating children? What are the expected benefits? The potential risks? Is it an increased risk of infection with Pseudomonas aeruginosa? Thanks in advance Best regards
16.07.2016
Pseudomonas detection
Hello, The serology for Pseudomonas (antibodies)- has it an interest and is it reliable to detect Pseudomonas aeruginosa when sputum cultures are negative or impractical because the child is not expectorating secretions (chronic colonization in the past with no Pseudomonas actually)? What would be the alternatives in terms of exams? thanks in advance cordially
16.07.2016
air conditionning
Good evening I'd like to know if it is possible to have a mobile air conditioner with release of hot air. If it is compatible with CF. Thank you for your answer
16.07.2016
Filter for drinking water
Dear expert team, I am going to travel to Sweden. My question: What is your opinion concerning the following filter for drinking water? https://www.globetrotter.de/shop/outdoor-kueche/wasserfilter-wasseraufbereitung/source-tube-kit-sawyer-filter-275755 [side inGerman] Can a CF patient with this device drink water from rivers without worrying? Or is the risk still very high, to drink bacteria with using this device? Many thanks for your advice. Best regards, C.
16.07.2016
CF even without cough?
I am female, 27 years old, I have problems with breathing since childhood and physical exhaustion, infections. For about one year, I have food intolerances, for 5 months I am short of breath, I am vomiting viscous mucus, have mucous stools, GI-problems (even for a longer time), suddenly gall-stones/operation, salivary stones, kidney problems, thick blood. Is that a hint for CF even without cough?
16.07.2016
Anal prolapse is getting more frequenct since beginning of the therapy with Kreon
Our son has digestional problems for a longer time and got about 5 weeks ago for the first time an anal prolapse. The tests that had been done then revealed that he suffers from CF and the anal prolapse is therefore regarded to be cause by the illness of CF. After the first prolapse, it lasted 9 days after another prolapse occurred. After this, it reoccurred after 7 days. For 3 weeks, our son takes Kreon with his meals. The first reaction was a stool pause for 3 days and since the first stool, that he got after this pause, he has again several times stool a day. Unfortunately, each of these stools is accompanied with an anal prolapse and this even enlarges compared to the first ones and regresses more and more difficult and more slowly. On the one hand this is accompanied with pain for our 3-year-old son, on the other hand we had once to go to the CF Center where a pediatric surgeon had to replace the prolapse. One cannot talk about a spontaneous regression anymore. Can these freuqent prolapses could have something to do with an intolerance of Kreon? In order to keep the stool soft, the CF Center prescribed today Makrogol, which we should give for 3 weeks twice a day. Is this a solution, to soften the stool and at the same time give Kreon? I am worried, to do it like this and to experience several times daily an anal prolapse, that is regressing more and more difficult spontaneously. Many thanks for your answer!
16.07.2016
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