Topics

Ivacaftor-lumacaftor combination in F508del homozygous patients
Could you give us some details for the double deltaF508 mutation? Is the Ivacaftor - lumacaftor combination study positive and in that case, how long will it take until market authorization for those drug and to treat a large proportion of sick patients. Thank you in advance for your response.
10.09.2014
Stagnant water
Hello, What do you really mean by stagnant water? What should we really be aware of? Thank you
08.09.2014
Puddles and mud
Hello, My 6-year-old son loves to ride a bike in the woods in puddles of muddy water. Is it dangerous for him? Can he play outside, the days following rain? Could we let him play on wet toboggans? Play football? Thank you.
08.09.2014
Towels
Hello, I have noted the need to wash our child’s towels after swimming but when we go on holiday, it is difficult to take 15 towels ... can we use the towel again if it was well dried? If we put it in the sun for example? Can we use two towels and alternate? And for the bath towel at the beach can we keep the same all week? Thank you. It's really not easy to know what to do, and more when the entourage gets involved and asks us many questions for which we have no answer, it's really hard !! Thank you for your support
08.09.2014
Water filter pot
Hello dear expert team, I would be interested if these water filter pots or water filter decanters are o.k. from the hygienic standpoint? I use the water from the tank for my coffee machine and for the water boiler. I am interested if I could use the water from the filter also for the vaporiser? Or could too many germs have colonized the filter? Many thanks for your answer in advance, Best regards,
21.08.2014
What is the meaning of solid particles in the sputum?
Dear expert team, I (female CF patient with Pseudomonas colonization and asthma) observe for about half a year that I have in the sputum smaller to larger pinpoint particles of deep grey colour. These mostly only come out after a hard, crampy cough and occur every one to two weeks. Can this be a hint for a coming infection or for fungi? I do daily about 5 hours of therapy with Pep, flutter, autogenic drainage and with all CF drugs (colistin, aztreonam each one month, one ampoule of rh-DNAse, budesonide and formoterole, azithromycin, salbutamol and NaCl 0,9%). Could I still inhale an additional mucolytic drug in spite of the asthma? Many thanks for your help and regards, S.
21.08.2014
Ivacaftor and Lumacaftor
The results of the phase 3 study have been published a few days ago. There were slight improvements in the 24-weeks study. How can I judge the resutls realistically for the future (timely manner, in case of long-term intake change of the mean life expectancy)? Many thanks for your time
21.08.2014
Liver
Is the liver enlarged and hardened in case of CF and is hereby a poisoning underlying?
21.08.2014
Worry
My little one is 4 years old, again and again bronchitis. She has had the medical check-up U8 yesterday and has underweight 96cm and 12,5 kg. She is sweating a lot, the stool colour is light... the pediatrician means she is not a CF child however if one reads about the symptoms then I start to worry. The pediatrician wants to see my girl every 3 months for assessing the weight. Light stool??? She is having bowel movments 1-2 times a day sometimes normally, sometimes a bit mushy... What does fatty stool mean? Should I again contact the pediatrician or should I wait until september for taking the weight?
21.08.2014
Placing i.v. lines in children
Which possibilities are there to place an i.v. line less painful (child, 8 years old, great fear, needs an infusion 3 times a day for 14 days)?
21.08.2014
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