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Topics
- Ataluren and research
- Hello, Some time ago I asked a question concerning Ataluren on this platform. Our two daughters (28 and 31) have the genotype Delta F508 and R1162X. Our CF physician mentioned at the last control, that recently quite promising results have been reported for Ataluren at a CF congress in London. According to Prof. Tümmler, who I have contacted already some time ago, R1162X would be suitable for therapy with Ataluren, in case it would be licensed on the market. Can you report about the latest developments concerning Ataluren? Many thanks!
- 05.12.2016
- Paragliding
- Hello, Are there any contraindications for a CF patient to do paragliding? Thank you
- 05.12.2016
- Homeopathy, probiotics and immune defense
- Hello, My 3-year-old daughter has antibiotic cures (15 days) with no symptoms other than a cough that you can not get rid of (no Pseudomonas aeruginosa or other bacteria). Pharmacists often advise to take (at the end of the treatment) a cure of probiotics in order to rebalance her intestinal flora. When I spoke with my general practitioner, he seemed very skeptical. Have studies shown an interest and above all an efficiency for the organism? Same with Homeopathy: is its "preventive effectiveness" proven, especially before facing the fall? Thank you for your answers or links. Cordially
- 05.12.2016
- Recommended amount of eurobiol® 25000u
- Hello, I am a mother of a 11-year-old child with CF (mutation Fd508). I reside in Morocco. I would like to know the number of eurobiol® 25000 unit capsules recommended for children of his age, depending on the amount of lipids in his diet. His diet is well balanced. Here below the amount of fat taken at each meal: -Breakfast: 30g -Lunch: 35g -Collation: 20g -Dinner: 25g Thank you in advance for your help.
- 05.12.2016
- Kissing
- Hello, I am now 17 years old and suffer from CF. I have fallen in love and we are just ahead giving each other a kiss for the first time. I never had a boyfriend before. My mother is of the opinion it would be too dangerous to kiss if I suffer from CF. Is that right? Best regards, A.
- 25.11.2016
- Taste / Smell gone
- Dear team, for several months, my sense for smell and taste has nearly totally completely gone. I have polypes, however nor very many, I have been operated twice and in so far all sinuses are widened. Antibiotics inhalative and orally, Vitamin B1, cortisone nasal spray, bromelain are not effective. I have to be careful with taking cortisone, that I have already taken several times (inner eye pressure increased, bone density, psychic affections). Nobody is taking the topic really for serious. Can it really be, that nothing can be done anymore? It really impairs my joy of living and is a burden for my relationships and social life, as I always liked eating and cooking. I am indeed a bit depressive, which increases with time. Many thanks for advice, CF patient, adult
- 25.11.2016
- Pseudomonas aeruginosa and sterilization of the nebulizer
- We are parents who want to know when to sterilize nebulizers ? Just before the use? Or after using and letting dry on a paper towel without active drying, in a dry and clean box? Is pseudomonas transmitted via the air? When is the best time to sterilize? Before or after using? Thank you for your answers on this point of hygiene.
- 25.11.2016
- yoghurt at home
- Hello, Is there a risk to consum home made yoghurts (because there is fermentation for several hours)? Thank you
- 07.11.2016
- Sexuality and libido
- Hello I'm a 23-year-old CF woman. For 3,5 years I have a boyfriend and I have great difficulty with sexuality: I am more often tired and I have a "sensitive" cervix (inflammation). I bleed after every sexual relation (this problem has been seen and reviewed several times with a gynaecologist and despite treatment and operation, it's coming back...) Is there anything to do against low libido? A help? Propitious moments? For the day when I'm not with him I think a lot and I really want him, but once in the evening I no longer think and when we go to bed my only wish is to sleep. However once in action I forget my fatigue, but I never wanted before. I feel that this becomes a real problem in our relation and my boyfriend is more and more frustrated. Thank you for your help
- 07.11.2016
- Genetics
- Hello, if a complete sequencing of the gene had been done 4 to 5 years ago, however the symptoms persist (mucus, colonization, pancreatic insufficieny, normal sweat test), does it make sense to have a new genetic investigation done after these years? Many thanks!
- 07.11.2016
