Topics

Flight in an air balloon
Can a flight in an air balloon cause problems for a CF person with an FEV1 of 60%?
04.08.2011
G551D and delta F508 mutations
Hello! My daughter has the above mutations. Can you say something about progression? Could VX770 help? She is six months old. Would an application be too early at this point?
04.08.2011
Pancreas
In me, CF has manifested itself in the pancreas. What is my life expectancy? I am at present 57 years old.
04.08.2011
Connection between albumin and vitamin A deficiency?
Dear team, My current lab values say that both my albumin value and vitamin A level (104 µg/l) are too low. I have been struggling with the vitamin A for a while, despite carrot juice, red pepper, green vegetables, etc. Now I read that albumin is one of the body’s most efficient antioxidants and that it transports and distributes vitamins. Above all, I would be interested to learn whether my vitamin A deficiency could actually be caused by the low albumin levels and whether one can get this under control. For instance with chlorella, which is supposed to have a high amount of beta carotene (pro-vitamin A) and to be able to increase the amount of albumin in the blood. Thank you and kind regards.
04.08.2011
bacteria private pool
Hello, We have a private pool. Despite the usual treatments done, I'm afraid that the water is infected, including Pseudomonas. Is it recommended to perform a thorough analysis of water before each summer through a private lab? thank you in advance for your reply
02.08.2011
Car air Conditioning
Hello, Is air conditioning in cars harmful for CF patients ? Are there precautions to take or is it better not to use it? Thank you for your advice.
02.08.2011
Ripened cheeses, bacteria, moistures
Hi. In our family we like sometimes to eat not pasteurized and well ripened cheeses. Is it dangerous for our child to come with us to the cheese dairy (he doesn’t touch the cheeses and doesn’t visit the maturing cellars)? On the other hand, can he eat these cheeses (I think to the blue cheeses with moistures, “cantal” with dust mites on the rind or other milk-uncooked cheeses which contain of course bacteria)? Thanks for your response.
02.08.2011
pepper
Hi, we have heard about bacteria in pepper (pseudomonas ? cepacia complex ?). Is it true, because we don’t use pepper yet? Thanks.
02.08.2011
Fatty liver
Hello, Today, my daughter (will be 3 years on July 7, 2011) [question was asked in June 2011] and I went to her annual check-up. She has CF (del508). The gastroenterologist was quite satisfied, the pankreas was inconspicuous, although she has a pancreatic insufficiency and needs kreon. Futhermore, he noticed a slight, point-shaped fatty degeneration of the liver. Is this common for this age? What can be done against it? Do you use ursofalk® (ursodeoxycholic acid) at this point already or only in case of a beginning cirrhosis? Or is there nothing that can be done? Is the fatty degeneration the key enabler for a cirrhosis? Can occasional fatty stools caused by too little kreon accelerate the fatty degeneration? Many thanks. Vera M. ----------------- Ms M. asked a follow-up question which is copied below in the answer section.
02.08.2011
Abdominal belt in physiotherapy
Hello, I have a question concering physiotherapy. Meanwhile, our daughter (2 years old) has received two belts that are placed around the abdomen and the chest (ribs). At the beginning, only one belt was used, and that at the level of the ribs. Despite explanation I am still not sure what the belt is used for. Why is the abdomen now bound as well? What is the effect of the belt? What is the optimal usage and how long should it be used? There seem to be different opinions. Would it be best to use the belt as often as possible or is it sufficient to use it twice a day during the inhalation and additionally at night? Many thanks for answering.
02.08.2011
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