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- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
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Topics
- European CF Wareness Week
- Can I order bracelets to participate in the European CF Awareness Week?
- 19.10.2009
- Prevention Pseudomonas
- Dear members of the expert team, some CF patients already have pseudomonas infection at the age of 2 where others are only infected at the age of 18 years. Is anything known about risk factors or in other words what can you do to prevent infection (of course I know the guidelines on hygiene and evitating contact with contaminated water). Should we for example forbid our daughter to play in the sand etc?
- 19.10.2009
- Genetic screening
- We have a five year old daughter with CF. 3 years ago my wife got pregnant but she had an abortion because the fetus was diagnosed with CF. Which procedure should we follow in order to have a child without CF?
- 19.10.2009
- Swine flu
- My daughter has CF and she is going to school for the first time. I would like to know if she is going to get swine flu and how dangerous this may be because I am extremely worried.
- 19.10.2009
- Replacement of tobi
- Hello. I would like to ask about a new kind of device (as a replacement for tobi) that will be smaller in size (like the one used for salbutamol). I have heard that it may be commercially available in the next 5-6 months. Is it true?
- 19.10.2009
- Bacteriophages
- Bacteriophages have been known since 1916, but have been pursued less especially in the West due to antibiotics. Due to PSA’s resistances, bacteriophages particularly isolated for the PSA of the patient, should gain importance for the patient. My son (5 years old) has repeated PSA even after two years. He had iv therapy with Tobramycin and Meropenem, while inhaling with Tobi® alternating with Cholestin (four-week rotation). After subsequent treatment with Ciprofloxacin, he was PSA positive again and sensitive to Ciprofloxacin. Now he is getting Ciprofloxacin again. Back to the question: is there any serious research on bacteriophages as opponents to PSA? The completely different mode of action would make one forget resistances to antibiotics. Who could provide information on this? Since the bacteriophage only has to be isolated, it is not suited for patent protection and therefore of little significance for the pharmaceutical industry. Of course, if there is any serious work being done on this at all, several years of gathering information on side effects and long-time experiences will certainly be necessary until a therapy could possibly be introduced. Kind regards, Kay
- 14.10.2009
- Social contacts
- What is the impact of CF on social contacts (social functioning)?
- 14.10.2009
- Bronchoscopy
- Hello, My daughter is 19 years old and for 5 years she has one infect exacerbation after the other. Currently, we have like 4-6 IV therapies per year. During the last treatment stay in Tannheim [place in Germany] a patient told my daughter about bronchoscopy. During the bronchoscopy of this girl, a lavage of the lung was made and the antibiotics reached the concerned areas directly which caused an improvement in her case. Now, I found an information in the internet where a patient also writes about bronchoscopy on a regular basis. However, the medical doctor of our ambulance did not give us the information we needed. Does bronchoscopy make sense? When should it be made and what are the risks and what else has to be considered? Please help us because it cannot go on like this. Best regards, U.
- 14.10.2009
- Test for CF at birth
- Do all clinics in Belgium test for CF at birth ? Greetings and thank you
- 13.10.2009
- Genmutationcombi F508/R117H symptom free
- My husband (age 46) has a very mild disease of CF (F508/IVS-5t) so that most of his life he has been without any symptoms. He only has absence of the vas deferens. Now they have found out that I carry the R117H mutation. Since we would like to have children we want to know about possible risks. When surfing the net I found out that the worst possible combination (F508/R117H) does not necessarily lead to a sick child but that just as my husband such a person could go through life without any symptoms. The explanation would be that R117H is not always associated with symptoms. Is this correct ?
- 13.10.2009
