Topics

Modifier genes ?
Hello, for several weeks, I hear a lot about modifier genes. Could you tell me more? How far is the research? Have they been identified?
08.04.2016
CF and a child with auto-immune hepatitis
Hello, my daughter is 7 years old and suffers from CF, in her class there is a child who suffers from an auto-immune hepatitis. My daugther has already had Pseudomonas aeruginosa in the throat swab several times, is there a risk for transmission? Or is there in general a danger for one of the two children? As a child with auto-immune hepatitis, does one have another germ spectrum than healthy children? Shall the children go into different classes? Many thanks for your advice.
18.03.2016
Sterililzing with vaporiser: new study
A friend of mine wrote recently to the author of a study in Austria, in order for ask her about the security of a certain, very popular vaporiser (Mamajoo with drying function). The lady answered firstly, that the Mamajoo had been tested and was a hatchery for germs (via the drying function the surrounding air is blown on the inhalation devices); and secondly, she said, that the best method would be the following: to sterilize the inhalation devices and to let them stand wet in the vaporiser until the next usage and then use them again. The study of question (http://www.cysticfibrosisjournal.com/article/S1569-1993%2815%2900167-8/fulltext) tested sterilizing protocols, hereby of course devices have been used. Mamajoo had also been tested among others, was however not the important message; more likely the important message was, as mentioned above, that the best way of sterilizing inhalative equipment was to let the sterilized eiquipment stand wet but closed in the vaporiser until used again; instead of the known dogma: only use dry inhalation devices! This caused great reactions in our patient group, because this is opposed to the advice we got until now. Therefore it would be great, if you could give us a well-informed adivce on this. Many thanks in advance,
18.03.2016
Snake and CF
Hello , My 11 years old CF daughter has a heated terrarium in her room with a spot that contains a snake. The litter is purchased in a petshop and there's inside a container with water regularly changed. What is the risk for her to have Pseudomonas aeruginosa? Knowing she would not put her nose in the container, and that's not her who changes the water. But she often cares for the snake and puts it up to her shoulders so close to her face. The snake goes in the water when "travelling". Thank you for your reply .
18.03.2016
Drinking bottles
My daughter is 7-years old and suffers from CF. I am insecure concerning the usage of water bottles. Due to the supposed colonization of germs in case of refill-bottles, I have changed to one-way 0.5 litre bottles (only for usage in school and during sports). The bottle is emptied within one day and at home we drink only water from glas bottles. Do I have to worry because of chemicals in one-way bottles?? Or is this the smaller problem? Many thanks for your advice
14.03.2016
R1066H
Dear ladies and gentlemen, our son has been diagnosed to suffer from CF. It deals with the mutation R1066H, a rather seldom mutation. Do you know the clinical course and does it belong to atypical CF? Many thanks for your answer. Best regards, M.
14.03.2016
Diagnosis
Hello, how high is the risk, in spite of negative tests after birth (those test had been done because the sister of the mother suffers from CF), that the child has still CF? The digestion seems to be o.k., a nearly permanent cough is striking. The child is 2 years old and is in contact with many other children, so that also constant infections could be underlying.
14.03.2016
Building of a house - water filter?
Hello, I am 32 years old and suffer from CF with a mild course, the lung function is nearly on normal level. I am planning the building of a houlse and I ask myself, if it makes sense to provide the water supply of the house with a special water filter, that prohibits the formation of Pseudomonas in the water circulation. What are your thoughts on this topic? Many thanks for your constant efforts! Best regards,
06.03.2016
Shall we do a testing?
Hello, my brother is suffering from CF (lung and pancreas involved). I have an 8-year-old son, who has since birth again and again bronchitis, barking cough, high fever, obstipation, problems with the stomach. He has now his third pneumonia, which is bothering us now for 7 weeks already...! His thriving is absolutely normal (height and weight), he has no clubbing fingers either in contrast to my brother! Would you in spite of this recommend a testing to us? I am asking myself what is going on, as the recurrent bronchitis and severe pneumonias are worrying me! Best regards and many thanks, N.
06.03.2016
Cleaning of a flute
My daughter is 7 years old, has CF and is learning to play the flute at the moment. The flute is made of wood, the upper part is made of synthetic material. What do we have to take into account concerning cleaning??? Is wiping of the outside enough, should one rinse the synthetic part and let it dry or only dry it with a cloth from the inside?? Many thanks for your advice
06.03.2016
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