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Topics
- VX Combo trial 770/809
- Hello, how long will the combo trial phase III last? When will the results be presented? Thank you, Best regards,
- 15.11.2012
- shake hands
- I have Cystic Fibrosis. Is it better not to shake hands during the winter months (e.g. birthdays)? Will I get less sick that way?
- 15.11.2012
- diagnosis
- I have a question concerning my son, almost six years old. To me he looks healthy, he grows well and he has normal and regulars stool without noticing anything abnormal. During the winter months however, he has often been ill, although at present he is fine. Whenever he gets sick or tired he coughs a lot and we have been advised to treat him with salbutamol puffs. We have just been told that a niece was born with CF; the father of this niece is the nephew of my husband. (both sons of two sisters). My question is therefore: should I worry about my son having CF? Thanks for answering my question.
- 15.11.2012
- Lung cilia
- Hello Results of Brice Marcet (CNRS [National Center for scientific research], Sophia-Antipolis, France) concerning the identification of molecules that promote cilial growth of epithelial cells are good news but I imagine that we should be cautious before being too exited. However, could you tell me what will be the positive consequences if that’s indeed possible to make lung cilia grow again? Thanks for your answer
- 15.11.2012
- Possibility for CF
- Dr. Doudounakis, I am sorry to trouble you again, but I am writing you again and again because I am very worried. It is about the child that did the sweat test at Rio Hospital with the result of 59. I was told by the laboratory there that their reference values are higher (0-60 for normal) because they measure both sodium and clorium. Do you think I must be worried, given the fact that the genetic testing of the child for 95% of the CF mutations came up negative? We have tried at least 10 times to do another sweat test but the child does not sweat.
- 15.11.2012
- Voice hoarseness
- My child is 3 years old and suffers from CF. For a long time there is a hoarseness in his voice. Does it have anything to do with CF? I blame it on the Airway clearance therapy, or to the fact that he screams a lot. I would like your opinion.
- 15.11.2012
- Need for checking
- My husband is a carrier of the DF508 CF mutation. We have both been checked for the 75% of CF mutations, I with negative results. Our son, according to the results of the amniocentesis does not carry the mutation of his father, and the IRT results were negative as well. Does the child need to have a sweat test, if we take into account the fact that he is nearly below the lowest growth curves for height and weight? He does not present any clinical symptoms of the disease, but I believe that he has an especially salty forehead (I was told that this may be an indication for CF). Is there any chance that I may be carrying a CF mutation that is not included in the 75% percentage I was checked about and the child may carry an undetectable gene as well? The child is 2.5 years old.
- 15.11.2012
- Cystic fibrosis
- How possible is it for a 9 month old baby, who does not eat much and has had respiratory infections (from a severe cold to bronchiolitis) to suffer from CF? It has been sick 4-5 times in 9 months. During my pregnancy I was checked for the DF508 mutation with negative results. Thank you
- 15.11.2012
- Sweat test
- I would like to ask how possible it is for a child with asthma and a negative sweat test to have CF? Is there any further checking necessary?
- 15.11.2012
- Checking for CF
- My daughter is 15 years old. She was checked for CF at the age of 11 after chronic constipation and chronic bronchitis. The bronchoscopy revealed generalised and local inflammation. After a treatment with antibiotics the CT was normal. We did 2 sweat tests with results 44 and 55. The genetic testing was negative for the father and positive for the mother (mutation G542X/genotype G542X/N). The NO check was normal, but with the lowest normal values. There is a suspicion of multicystic ovaries. Do you think we need to proceed with other tests for CF at a specialized center?
- 15.11.2012
