ecorn-cf: App. question list

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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

medicines - muscles: Hello, I am the mother of an almost 16 years old boy with cystic fibrosis. He practices an average of 17 hours of sport per week (school and soccer in club). For a while, he often suffers from various injuries, especially contracture (thigh and back). His physio asked me to inform me whether his injuries would be of metabolic order. On whether the pancreatic enzymes he takes could be of influence ? Knowing that he only takes this treatment together with the vitamins ADEK. His muscle problems are they related to something else?? In advance thank you very much; 07.04.2011

Research on Meveol®: Hello, I attended this weekend in Reims the annual General Assembly of Vaincre la Mucoviscidose. In the presentation on advances in research, it has not been referred to the ongoing development of the drug Meveol® whose lab results were announced effective and promising against bacteria including Pseudomonas. What can we expect from this molecule? Thank you in advance; 07.04.2011

Compound heterozygosity - does one or both defects have to be corrected causally?: Hello, my daughter, five weeks old, born with meconium ileus, genetic result: delta F 508 on one allel and a stop-mutation on the other allel, has therefore a heterozygote combination of 2 different defects. According to my research the substance VX809 is investigated for delta F 508 and the substance PTC124 for stop-mutations. Of course there is still a long way to go for both substances to the possible availability of a drug. My question is the following: for a causal treatment does only one of the two defects have to be corrected or does both defects have to be corrected with drugs? Many thanks.; 07.04.2011

Requestion: L1480p: Hello, I have asked what is known about the mutation L1480p. Now my question is, can one find out from which region this 40-year-old Italian man comes from? We are also Italians.... I as mother have also CF with the mutations L1480p and TG12-T5 allele. I am 32 years old and did not have any symptoms so far. I have only recently been told, that I have CF. What do you know about this combination and its course? Thank you, Yours sincerely,; 07.04.2011

Mutations delF508 and L1480p: Hello, my daughter has CF with the mutations delF508 and L1480p. Nobody knows however, which course of the disease will bring the mutation L1480p. Do you know anything about this mutation? Yours sincerely; 07.04.2011

MRSA: Hello. My daughter has the MRSA and since she has it she is not doing very well, totally phlegmy cough and permanent vomiting. Can we do anything about the vomiting? As she loses also weight by this. Thank you.; 07.04.2011