Topics

Haemophilus influenzae
My daughter, 1,5 years old suffers from CF and has now for the first time Haemophilus influenzae in the throat swab. Our treating CF physician regards it as a harmless germ, it is therefore not treated at the moment. I would like to have a second opinion. Of course, we do not want to give antibiotics if it is not necessary, however she suffers a lot from the increased mucus, she coughs therefore much until she vomits (what we did not experienced so far) and she eats less. We inhale more frequent with 3% saline solution. I do not know, what to do, as a bronchitis or pneumonia is not desirable, either. My question is, would you treat the germ and if not, does it disappear itself? Many thanks
17.03.2017
Prescription of Orkambi® not possible in Ireland
Hallo, my boss in Ireland is a father of a 15-year-old girl with CF. Unfortunately Orkambi® is not licensed in Ireland. Is there a possiblity to get it in Germany for her? What does he has to do to get it? Is private insurance enough or do you have to live in Germany, paying a german health insurance? How much are the costs of treatment per year for it? Thank you, N.
17.03.2017
Life expectancy in case of F508del
How high is the average life expectancy in case of F508 del homozygous?
17.03.2017
CF mutation carriers
My wife and I are carriers of a CF mutation. Four years ago my wife was pregnant and she and I were tested and found positive. Afterwards, since the pregnancy was advanced, the doctor took a sample from the fetus, which was found to be just fine, not even a carrier. My wife is now pregnant for the second time. What testing must we do to find out if the fetus suffers from CF?
24.02.2017
Lack of understanding of F508del-9T/Variant 5T
Hello my partner received his result of genetic analysis and it is noted that he is compound heterozygous F508del and 5T variant. Until then I understand but it is also noted (genotype [p.phe508del / 9T] + [- / 5T]) then why the 9T? Are theF508del and 9T located on the same chromosome? Does it mean that he has three CFTR genes? As for the 5T variant, it is not clear which one of the TG 11, the TG 12 or the TG13 is normal?
24.02.2017
Pulmonary injuries
Hello, Can you please explain me what types of lesions can be seen in a young asymptomatic patient and what treatments can be put in place. Our CF Centre talks about the possibility of perfectly silent and asymptomatic lesions. We question the interest of exposing a child to the radios of an XRay every year in the absence of clinical signs (infections, cough ...). Especially if it is just to find lesions for which there are no treatments. Thank you very much for your help. Cordially
24.02.2017
Research on animals
Hello Are animals used in the search for a cure for cystic fibrosis? Best regards
24.02.2017
Rhinopharyngitis
Hello, I asked a question recently about the posterior rhinorea and I had as a response that the nasal discharge was rare in CF patients. But why do CF children repeat nasal rhinopharyngitis (with posterior nasal discharge) if rhinorrhea is rare? Can only ENT involvement be a moderate form? A still clear discharge without fever with chronic dry cough can make one think of a cystic fibrosis? Thank you cordially
24.02.2017
Thrush
Hello, What can we do to prevent our 2 year old from getting thrush (candida fungus)? She has it regularly, especially after the antibiotic cures. It spoils life because she refuses to eat and it is very painful. Thank you for your help.
24.02.2017
Fumes and smoke
Hello, We would like to know if there are precautions, arrangements to be made in relation to fumes and smoke emitted during concerts, shows… for people with cystic fibrosis? Is it better to avoid them? Do they carry risks? You can also find this kind of machine to make smoke in certain stores or to diffuse vapors of essential oils, what precautions are to be taken? Thank you beforehand, Cordially.
24.02.2017
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