Topics

Bacteriophages
Hello, I know, that the phage therapy is not licensed, yet. However, I wonder, how far research is concerning the fight against germs like MRSA, Pseudomonas aeruginosa and Staphylcoccus aureus. I myself have Pseudomonas and Staph. aureus colonization, my sister, also suffering from CF, has MRSA that is actually treated for the second time. Many thanks for your efforts.
17.03.2017
Influenza vaccination for a one-year-old child with deltaF508
Hello, our one-year-old daughter is at the moment vaccinated with living viruses against measles, rubella and varicella etc. Would it be advisable to have a flu vaccination done at the same time? Many thanks for your answer.
17.03.2017
Hope
Hello can we really have confidence in medicine? Must we really believe that one day cystic fibrosis will be cured? Is a treatment for Class 5 mutations underway? Best regards.
17.03.2017
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
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