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Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
- allergy
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- asthma
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- general aspects
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Topics
- Question on food oils
- Hello , I am currently asking a lot of questions about alimentary oils. Can CF people consume cold-extracted oils (rather used by small specialized companies) compared to refined, inert and virtually unalterable oils? Can we consume unrefined oils, cold extracted oils or is there a risk of developing germs and bacteria in these products that would be dangerous to us? Are the food hygiene standards of its small structures (sometimes traditional) adapted to our pathology? Thank you for your reply, cordially
- 17.03.2017
- Mutations F508del and Q220X
- Hello, Our son was diagnosed at birth following a meconium ileus that caused occlusion ... I would like to have information about delta mutations F508del and Q220X. Thank you.
- 17.03.2017
- Mutations F508del / Q220X
- Hello, Our three month old son was diagnosed at birth. It has the mutations F508del and Q220X. I would like to know how people with its two mutations evolve. Thank you
- 17.03.2017
- Reverse osmosis device
- Dear expert team, we are planning to install in our home a reverse osmosis filter device. There are two alternatives offered: 1. Standard device, that uses a 10 liter storage, that is normally filled always automatically and from which the rinsed water can be taken out quickly 2. „Direct flow“ device, without storage, that provides rinsed water about 1 to 1,5 litres per minute, therefore less comfortable Question: are there any concerns if our CF grandchild is visiting us and have both devices to be judged differently concerning the risk of contamination with germs? What would you recommend? Many thanks for your advice.
- 17.03.2017
- 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
