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Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
- allergy
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- asthma
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- covid-19
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- hepatobiliary disease
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- modulator therapy
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- nutrition and GI problems
- oxygen supplementation_therapy
- physiotherapy
- Pseudomonas aeruginosa
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Topics
- Individualized education plan (IEP) at school
- Hello. My daughter starts school in September. I've asked the CF centre following my daughter if it was possible to make an IEP with them. They replied that there were no need to write one and a certificate for medicines and prescriptions would be sufficient. I'm a little stressed by this response. The school that will host my daughter asked for a IEP. I will contact the local doctor, but I do not know if he will know all the needed details. Can you tell me the essential content of a IEP for this condition? Thank you very much for this site and for your work. Cordially
- 28.02.2013
- Pseudomonas aeruginosa
- Hello, I have a little 2 years old boy with cystic fibrosis. What do you think of using a steam cleaner for home maintenance, is it dangerous to use? Are there risks of developping pseudomonas?
- 28.02.2013
- Positive sweat test
- Hello, I am 29 years old and in 2012 I had two positive sweat tests at 96 mmol / L. Genetic tests have been made by the laboratory from Créteil, but no abnormalities were detected. I have got a significant pulmonary impairment since 1999, including bronchiectasis. Pulmonologists' opinions differ. With only my positive tests, do I have to search for another disease? Thank you.
- 28.02.2013
- New drug for ΔF508 as of March 2013?
- This question is addressed directly to Prof. Dr. Burkhard Tümmler [original question was asked on the German platform of ECORN-CF]: Is it true that there will be a new drug on the market as of March 2013 which is supposed to make a "normal" healthy life possible for CF individuals with type ΔF508?
- 28.02.2013
- 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
