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Topics
- Physiotherapy
- I have a question concerning physiotherapy with a patient with cystic fibrosis. What actions are needed here? Can the patient do it at home? What effect has it on the patient, apart from clearing the airways? Thank you.
- 26.02.2013
- Mucolytics - do they make sense for infants?
- Hello, We have a 4-year-old daughter with CF. For 3.5 years she gets 2 x 2,5 ml ACC (Acetylcysteine) daily (if there is more mucus a bit more). We are asking ourselves if it really makes sense to administer ACC on a daily basis. Our general practicioner said once that it would be good to change the mucolytic from time to time, i.e. to take another preparation, as otherwise ACC would eventually become effectless. Is that so? Does it make sense at all to use a mucolytic every day? Some adult CF individuals told me that they do not use a mucolytic since they inhale every day and this also serves to solve the mucus. Our daughter usually inhales once a day with 3% MucoClear (hypertonic saline); in case of infection more frequently. Thank you for answering. Many thanks and greetings.
- 26.02.2013
- voice and CF
- Hello I am a student in audio phonology, and I make a presentation on cystic fibrosis, and the impact of this disease on patients' vocal cords, could you tell me if there are few references in the field ? Thank you!
- 26.02.2013
- Explain the disease to older siblings
- Hello, we are the parents of three children aged 7, 5 and 2 years. The younger has Cystic Fibrosis. We have not explained to the older the illness of their sister. They begin to ask questions. They know she is sick, she should gain weight and eat more than them. But we do not know when to explain and if we need to be accurate. We got a little lost facing these first questions. Should we tell them everything? Cordially.
- 26.02.2013
- Polar body diagnostics
- Dear expert team, My partner (age 32) and I (age 38) are both genetic carriers for CF and our daughter (19 months) has cystic fibrosis. We would like to have another child and of course we would be very happy if it would be healthy. By reason of our ethical attitude termination of pregnancy is not an option for us. Therefore, we have been looking into polar body diagnostics as a possibility of pre-conceptual genetic diagnostics. Maybe you could help us with your experience? How successful are the prospects to have a healthy child with the aid of polar body diagnostics? Is this treatment practised frequently and successfully in connection with CF? Are there specialised centers or can we trust each fertility clinic/center offering polar body diagnostics? Thank you for giving your time and expertise. Best regards, J. & K.
- 26.02.2013
- Move to France from UK with a 2.5 yr old with CF
- My son has CF, with two copies of deltaF508. He has excellent health care in the UK and remains well, despite culturing pseudomonas 3 times in his first 18 months. Now my husband has had a good job offer in the South of France and wants us all to go. What would our position be with regard to healthcare? Is there any national health care available to us as EU citizens? Would there be any English speaking health care available? How does the CF care compare with that in the UK? We currently have joint care between Eastbourne General and a team at Kings College London.
- 26.02.2013
- Diagnostics / Desire for a child
- I am a German gynecologist and have a medical practice in France. I have a patient who has a desire for a child and whose sister has CF. Which diagnostics should be made?
- 26.02.2013
- Mutations
- Hello, can you tell me what these changes has, by drawing on the answer given here: http://ecorn-cf.eu/index.php?id=65&L=5&tx_expertadvice_pi1[showitem]=2125&tx_expertadvice_pi1[search]= My son has two mutations, DeltaF508 and CFTRdup2_18.
- 18.02.2013
- stroll
- Hello, My son is 7 months old and has cystic fibrosis. I love going for walks. But I wonder if there is weather to avoid: Rain, fog? Or a good walk is always good to take? Thank you very much!
- 18.02.2013
- Cirrhosis of the liver
- Hello, My daughter has been diagnosed at the middle of december to have a very severe fibrosis of the liver with beginning cirrhosis. Is it not mandatory that she will be put on a waiting list for liver transplantation immediately? Unfortunately, the CF physician is very hesitant, which I do not understand. Probably you could tell already an opinion about this. We can only talk to the doctor at the beginning of january. Of course, this does not get out of our minds.... Best regards, H.O.
- 18.02.2013
