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Topics
- Mutation c.3718-3T>G and deletion of exon 16 to exon 20 heterozygous found
- Hello dear experts, my daughter (today 12 weeks old) has been diagnosed to suffer from CF after she had a sweat test at the age of 5 weeks. A molecular genetic investigation had been done. Via this investigation, a heterozygous c.3718-3T>G-mutation in combination with a heterozygous deletion of exon 16 to exon 20 of the CFTR gene has been found. Additionally the rare change c.224G>A,p.ArG75Gln has been found heterozygously. Now my question: What does this mean and can one make a statement on the clinical course of the illness due to this mutations?
- 29.07.2016
- 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
