Mutation class R352Q/2184insA
Hello, our daughter has the following mutation: R352Q/2184insA, after intensive search I could not find the class of the mutations, even not in the database Can you tell me; - how many people have this mutation? - to which class this mutations belong? - what does this mean for the course of the disease? Many thanks, D. R.
Pancreatic inflammation in CF patient
My son of 4 has problems with his pancreas. It's about chronic pancreatic inflammation. What can I expect and is it recognizable?
Backpack holiday
I am leaving to Norway by car this summer and I am planning to make a multi-day trip with backpack. What is the best way to sterilize my aerosol ? I have heard of javeltablets but then I have to find a source of fresh water each time. Also, I wonder how to keep pulmozyme permanently below 8 degrees celcius, because that also seems to be difficult to reach through a cooling bag.
Kluyvera ascorbata in the sputum
Hello, in my last sputum sample there were besides Staphlococcus aureus and Aspergillus fumigatus the above mentioned bacteria. My treating physician thinks that waiting would be the right decision, until the next sputum sample. The symptoms I have did not change. I never heard anything about this bacterium. Could you give me some information about it? Many thanks
PA MRGN 3/4 dealing with other people in everyday life
Dear expert team, I suffer from CF with the above mentioned germ. How to deal that status, if I am in public places? Concrete: can I visit a public swimming pool? Should I advise friends (non-CF/ "healthy") to protect themselves in case of visits at home, for some hours or overnight? Should one / has one to inform a person who wants to share an appartment with me before signing the contract? Etc.....etc....I think, the topic is clear. Many thanks ideally for official recommendations. S.
Looking for mucolytic drug
For a short period of time, I cannot get the oral mycolytic drug ambroxol anymore, that I took for the last 30 years with success. Therefore I am looking for a new oral mucolytic drug. Do you have a recommendation which one to choose? F. 45 years old
Family and transplantation
Dear expert team, my husband is just before coming on the lung transplanatation list. We have 2 children (2 and 6 years old). WE have been told, that he cannot come home after transplantation and cannot have contact to his children. I doubt this. What is your opinion? Best regards, C. M.
Segniliparus rugosus infection of the lung
Is there any experience with the treatment of Segniliparus rugosus? Many thanks. Regards, B.K. [name shortened by ecorn CF]
Potting plants
Dear expert team, My daughter has CF and is 4 years old. We want to pot plants in huge pots. I thought my daughter might help with that, however she shoud wear a mask. Is it really necessary? How high is the risk that she aquires problematic germs like fungi, Burkholderia cepacia.., when potting or later when watering the plants ? Many thanks for your answer, Best regards, EM
Towels: how often do we have to change?
Dear expert team, my daughter (CF, 4 years old) uses in the kindergarten a cloth towel for drying the hands (mouth, face) after washing; those are changed every day, therefore she gets a new one every day. Until now she got every time after washing her hands a fresh towel - in order that she does not use a wet towel with probable germs in it. However I ask myself now, how fast germs grow or it it would be sufficient if she gets a new towel in the mornings and the next new one at lunch time? She is about 6.5 hours in the kindergarten. Thank you Best regards! EM
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