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- ABPA_Aspergillus
- accompanying diseases
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Topics
- Lack of hormones in case of CF
- Dear expert team, is there already any knowledge/experience with female CF patients older than 35. years concerning the production of hormones resp. a lack of hormones, which is caused by the lacking or impaired function of glands in case of CF? Many thanks for your effort, Yours sincerely,
- 30.06.2011
- Diabetes & CF & dementia
- If I (CF) have a diabetes, which is only hardly to handle due to the underlying disease, and I have in addition the worry to suffer from a diabetes-related neurodegeneration- to whom I do address for diagnosis and adjustment? Neurologist? Specialist for biochemistry? Diabetologist?
- 30.06.2011
- Pseudomonas Pseudoalcaligenes
- Hello, in the throat swab of my daughter (2.5 years old) now Pseudomonas Pseudoalcaligenes has been found for the first time. The center cannot classify this Pseudomonas. Perhaps you have an idea. Would you treat this germ directly with and antibiotic drug? Many thanks and best regards,
- 28.06.2011
- AquADEKs
- Hi I'm from Poland. In this moment we have problem whit buying AquADEKs. When in Germany we can buy this product.
- 27.06.2011
- CFTRdele2, 3 (21kb)
- Our baby has 8 months and was diagnosticated at 6 moths with CF. Now we have received the results from the genetic test:" Heterozygous carrier of a 21 kilobase deletion in the CFTR gene, which leads to a loss of exons 2 and 3 (CFTRdele2, 3 (21kb) A second mutation was not found." also, he was diagnosticated with Severe exocrine pancreatic insufficiency. No lung bacteria was found, no other lung disease. Since in Romania he is the only case, we don't have much information on this specific mutation. Could you please explain us how this mutation will affect him? It is "good" that he has only this mutation or it's a very severe one? Thank you very much in advance
- 27.06.2011
- pseudomonas
- Hi my daughter is 3 years and pseudomonas is found for the second time in 2 months. Our center offers the same treatment again (4weeks of tobi inhalations and ciprofloxacin) it didn´t remove the pseudomonas this time and i am affraid it will not take it this time. I am aware that other centers are more agressive and would use 14 days of IV treatment and then 3 months of tobi. shall we accept the same treatment or ask for the agressive treatment? what would you do i am so affraid of the pseudomonas turning chronic.
- 27.06.2011
- Standards of quality of CF-centers
- Hello, as it came repeatedly to negligences in my treating CF center, I am in general insecure, if I am still in good hands there. I have the feeling to point at all things myself, and that only in case of request it is thought about something. As long as it concerns things, where I can intervene, that is still all right (as in case of accidentally wrongly prescribed drugs), but concerning some questions, I do not really have the specific knowledge. How do I recognize as a patient, if my CF center follows the actual guidelines (in case there are any), e.g. concerning the frequency of doing certain investigations or concerning hygiene? Is there a ranking of CF-centers, so that one can probably decide to have a longer way in order to have a better treatment? Many thanks for your answer in advace.
- 27.06.2011
- Testing of water / water processing
- Hello, we are planning a holiday on the isle of Corsica with the camper. As our daughter suffers from CF, we are going to rent a complete new camper which is in a good hygienic condition. How can we test the fresh water on site and what do you recommend concerning the processing in the tank? Are there any good additives resp. some, which you could recommend to us? Many thanks for your answer!
- 27.06.2011
- cystic fibrosis and magnesium
- Hello, I am the mother of a son, 15, who has cystic fibrosis. In recent months, he has been supplemented with magnesium and vitamin B6 because tests showed a deficiency (genetic?) in the transport of Mg to the cell. A pediatrician specializing in treating children with pervasive developmental disorders with magnesium told me that a colleague is asking himself the question wether there could be a relationship between this deficit and that of the CFTR protein. Do you think this could be a possible track for research? Sincerely,
- 21.06.2011
- Foods and bacteria
- Are there foods to avoid in the case of cystic fibrosis? I think especially of bacteria and cheese such as Roquefort. Our CF Centre asks us not to keep water in the refrigerator more than 24 hours. What about food, such as a dish ?
- 21.06.2011
