ecorn-cf: App. question list

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Requestion on „F508del mutation – other mutations possible?”: My question is related to the question „F508del mutation – other mutations possible?” (http://ecorn-cf.eu/index.php?id=65&L=0&tx_expertadvice_pi1[showitem]=916&tx_expertadvice_pi1[search]=) from the 14.06.2010, for sure this is some time ago, from that answer I understood that a genetic investigation of the parents seems to be sensible, however I could have understood something wrong. I had understood, that the genetic analysis of my daughter (2.5 years) was not decisive. Do I get it right that if we are not both heterozygous carriers of the mutation it is not imperative that further children inherit the mutation with a probability of 25%? However, both parents must have a defect, even if it is not the same mutation, or, if there is no homozygousity, it can not come to a CF in case of a new pregnancy?? Does the insurance pay by the way for such a test? Thank you very much and best regards. V.M.; 11.04.2011

products soap bubbles and cystic fibrosis: Hello My little girl loves to blow soap bubbles. Are the bottles sold on the market at risk of contamination with Pseudomonas aeruginosa? Or any other kind of danger? The two answers given in English on the website appear at first sight somewhat contradictory. Could you clarify your advice on the use of these bottles by children? Thanking you in advance for your lighting, Sincerely; 11.04.2011

Induced cough: Hello, I am the mother of a French child of 20 months followed in France. We live in Morocco. My daughter has daily physiotherapy sessions. The respiratory therapist trained in France induces the cough reflex at least 10 to 15 times per session. Can this cause a fragility, an abnormal growth of the larynx or this anatomic area in the long term, if the gesture is repeated too much, too abrupt or poorly executed? thank you in advance Sincerely; 11.04.2011

newly diagnosed patients/year: Does anyone know approximately how many newly diagnosed CF patients there are in the EU each year? Thank you; 07.04.2011

nasal polyps: To avoid the recurrence of nasal polyps a treatment with dornase alpha has been proposed to my 12 years old son who has been surgically treated for polyps 6 years ago. His pulmonary status doesn’t need the use of dornase aerosol. Thanks to tell me what is the interest of such a treatment on sinuses.; 07.04.2011

sandbox: My three years old daughter will soon start kindergarten, where there is a open sandbox. Is this allowed?; 07.04.2011

cystic fibrosis and china painting: I am a 50 year’s old woman who had a late diagnosis of cystic fibrosis. I realize china painting for pleasure. I use as paint thinner lavender oil, orange oil… without any protection and with throat irritation. So I try to use a FPR P1 filtering half mask (called duck mask) which give me a suffocate impression. What is the degree of toxicity requiring what protection?; 07.04.2011

Mutations: One year ago my 20 months old daughter had 2 sweat tests over 200! The screening test was negative at birth. She is considered and treated as CF but has no identified mutation so far ! Nevertheless, she is very symptomatic, has been colonized with Pseudomonas and is pancreatic insufficient. Is there such atypical cases? Is the diagnosis finally assessed?; 07.04.2011

F508del homozygous: Hello, I have a question: my daughter has CF with the mutation F508del homozygous. Does anybody know what this says about the course of the disease?; 07.04.2011

Phenomenon in CF lungs: What phenomenon happens in the lungs of a person with cystic fibrosis?; 07.04.2011