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- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
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Topics
- 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
- TOBI® (tobramycin) and Ventolin® (salbutamol)
- Hello, I have several questions: 1.) When inhaling with tobramycin I notice a strong mucolytic effect. After the inhalation I have a lot of sputum. Much more than after inhaling 6% NaCl or Pulmozyme® (dornase alfa). Is it a side effect of tobramycin that the production of sputum is increased. Is this normal and do you have the same experience? 2.) I am 29 years old. I took salbutamol for a very long time since I was a child. In the last two years I was disadvised to inhale salbutamol because it is bad for my heart. Is salbutamol harmful for the heart if it is taken for a long time? Since a couple of days I am supposed to inhale Onbrez Breezhaler® 150 (indacaterolmaleat) and take at the same time SPIRIVA® (tiotropium) Respimat®. Am I supposed to inhale both at the same time or isn’t this the same drug just from two different pharmaceutical companies? If it is useful and safe, am I supposed to take both in the morning or one in the morning and one in the evening? Many thanks, Ingrid
- 31.03.2011
- NANA
- Dear all, My son is 11years old.CF del F 508/525del T. (on exon 4). What is the prognose for this combination of genas? Chloride in sweat is 65.We leave in small country Montenegro on the Balkan and we don't have big medical centar for CF,so your answer will help us a lot...Thank you!
- 31.03.2011
- CA 125 and cystic fibrosis
- Hello I wonder if CA 125 is necessarily higher when you have cystic fibrosis, due to the very thick cervical mucus. The rate of my CA 125 is currently 75. Thank you in advance for your reply.
- 29.03.2011
- Mutation
- Hello, Is the 1717-1G> A mutation (which is part of class I mutations) associated with premature discontinuation of protein production secondary to a stop codon? In this case, could it be accessible to PTC124 (Ataluren)? Many thanks for your reply. Yours.
- 29.03.2011
