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- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
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- drugs under development_genetic therapy
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- general aspects
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- miscellaneous
- modulator therapy
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- nutrition and GI problems
- oxygen supplementation_therapy
- physiotherapy
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Topics
- Hello
- I have one-year-old boy diagnosed with cystic fibrosis at 6 months. We did the genetic test and the result was: M - G 542X heterozygous; 9T. Child‘s doctor says that the outcome would be a milder disease and he does not believe he will have major problems in the future. But another doctor said that whatever the result is this disease is severe. What is exactly this outcome?
- 15.09.2014
- p.F508del
- Hello, We just received the two mutations of our daughter. The p.F508del and c.3140-26A> G (3272-26A> G) Please, what will be the common impacts of these changes even though I know it varies from one individual to another? Thank you in advance for your help and feedback.
- 10.09.2014
- Chestmaster® (high frequency chest wall oscillation)
- Hello, Can we give credibility to CHESTMASTER®? Could it eventually replace physical therapy sessions? Thank you in advance for your answer.
- 10.09.2014
- Living in Morocco
- Hello, I would like to join my husband who works in Casablanca with my CF baby. I wonder if my child's insurance coverage will keep going and what steps are upcoming. Thank you for your help.
- 10.09.2014
- CF mutation
- Hello, can you explain what does it mean that the F508del mutation of the CFTR gene has been found in my 5.5 year-old daughter, and what are the consequences for her respiratory as well digestive health? Thank you
- 10.09.2014
- F508del mutation treatment
- Hello, following the results released yesterday by Vertex to treat patients with two delta F508 mutations, what it about the patients with only one delta F508 mutation? In fact, when our son was born in 2011 we were told that there will be a cure for one of the two mutations, but for now I can find no information about it. Is it possible that the treatment will work as intended by our CF Center doctor? Thank you for your response, best regards
- 10.09.2014
- 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








