Topics

Crataegus
Dear CF-team, quite a time ago, the influence of Crataegus on CF had been investigated. However, I cannot find a final conclusive judgment/results in the internet. Can you give me (F508del-mutation heterozygous) some information about this? Best regards and thank you,
20.06.2011
Frolow breathing-exercise device from www.atmosana.eu
Is there a benefit known from the breathing-exercise device frolow from atmosana in case of CF?
20.06.2011
High-calory additional food
Is it correct from the medical and nutritional standpoint that CF patients replace the usual meals with wholefood by the "intake" of high calory additional food?
20.06.2011
Connection between joint pain and menstruation?
Dear expert team, for half a year I suffer increasingly from spasmodic joint pain. I first assumed a time-connection to the intake of certain drugs, now however, I stated that those batches are especially severe at the first days of my menstruation. As I have read in the meantime, the age-related osteoporosis of women is seemingly in connection with the menstruation resp. menopause. I am however still far from that. Has the osteoporosis, that occurs as a consequence of CF, something to do with that or is the occurence of joint pain and menstruation at the same time in me rather an accidental conincidence? Would this be relevant to treat in any respect? Many thanks for your answer in advance. Yours sincerely,
20.06.2011
Mould fungi during renovation of the school
Dear expert team, our daughter with CF visits the 7th class of a secondary school, that will be renovated from June 2011 on. The school is about 30 years old, the building should be kept, but indoors all rooms should be renovated one after the other. The lessons go on, the building site should be devided from the other rooms with wood panels. We are now concerned, that due to the removal of the old carpets and other materials mould fungi could be in the air, especially ABPA. Is there a method to screen the air for such fungi? Many thanks
20.06.2011
Safety to swim in stagnant water
I have a question whether CF patients are not allowed to swim in stagnant water. And how is it with swimming in the sea?
09.06.2011
Odd behavior of girlfriend with CF
Friendly Greetings, My girlfriend is from the USA, I am myself from The Netherlands. My girlfriend claims she has a heavy form of CF and won't make the age of 26 (currently 24 years old). Also she claims with this she needs to go to the hospital all the time and even gets hospitalized for most weekends and sometimes even the whole week. With the information I found so far, I could assume this could be correct. However the story continues. She also claims she needs to work on her school and homework, while having CF and that it takes her all day up to deep in the night. She claims to do this so she is sooner done with school and then perhaps travel to my country and study further here. A possibility, but not really a fact. She claims that she is very sexually active, but claims with this that she is not cheating on me. Well, this might be a question of trust I guess. But all for a reason that i add this, Ill explain later in this message. She also claims that she can beat marines twice her size (she is living on a US military base due to her father being there, so no training or real skills for this). Well this is very odd, she herself is just 5"2 tall and she really doesn't have much muscles to show for. Besides that CF should make her weaker like my own Asthma does with me. She plays a lot of PC games, which require a lot of mouse usage and typing. Not strange on it's own, but for someone with a heavy form of CF... shouldn't that be near to impossible? And for that matter, she works with programs that need high concentration, she makes things for games. such as tools, walls, and such that is visible for the players in the game. Something rather odd if you ask me with CF, but please do correct me if I am wrong in this. Her drawings she makes on her PC using a special pad to draw on, look stunning and pretty much flawless. Now, this seems to me a nice thing to do. But I find it very odd Now there are a few other odds and ends that are very strange for someone with CF, but more of a private matter. Now I got a tip from a American man, around our age, that claims that if she really is that far with her CF, she should be in a hospital and even unable to play games, make such things, do so much sex, etc. He even said that she most likely would be in the hospital 24/7 unable to do much at all. Now I wish to ask for help in this, to understand this all whether she is right, or these feelings of something being wrong is right. Could I please get for each part a detailed answer, preferred in English. I love her and all, but I can't stand lying and I am not a fool that just buys all this without making sure it is true or not. Thank you in advance. Kind regards, J. M.
09.06.2011
Risk of transmission of MRSA
Hello, we are a bit worried after we got the information, that the grandfather of our daughter (1.5 years, CF) now has MRSA after a long-lasting inflammation of the elbow. As we did not know, what he had exactly, he paid very much attention to hygiene in dealing with our daughter, that means few direct contact and every time disinfection of his hands before. How high do you estimate the possibility of transmission of the germ to our daughter? As MRSA is a problematic germ for CF patients we are of course a bit worried. Our CF-doctor estimates the risk under the above mentioned measures to be small, particularly as we saw the grandfather with this inflammtion only for a few days and he only wants to do a thoat swab in the middle of April as it is planned routinely. Furthermore, we consider as parents to have a swab done ourselves. Would you recommend this to us? And how do we deal with our grandfather from today on? How do we act correctly, especially with regard to our daughter? What should he or we avoid to do as long as he has the germ? Many thanks for your advice.
09.06.2011
spray
I want to know if we can use a diffuser to refresh our son (cystic fibrosis) when it is hot? Thank you for your reply
08.06.2011
Nutrition: conventional or organic?
Dear expert team, with regard to our daughter (3 months, F508del+R553X) we asked us the question of the later nutrition. Especially, we do ask ourselves, if the used antibiotics in the conventional keeping of animals plays a role with regard to later resistances. Therefore the questions: Do you have any information that the meat produced with convetional animal keeping can be dangerous for CF patients beyond the normal extent for healthy human beings? Can there be problems or risks with other conventional produced foods? Would you exclusively recommend bio-meat or bio-food? Many thanks, Yours sincerely,
08.06.2011
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