Topics

Vaccine against Pseudomonas aeruginosa
Hello There was a clinical trial for Pseudomonas vaccine. What are the news about this clinical trial? Are results available? Thank you.
29.07.2014
Phage therapy
Ten years ago I have already sent a question to Vaincre la mucoviscidose (French CF patient organization) concerning the subject without a really satisfactory answer. While antibiotic resistance is becoming a social problem why isn't the use of phage therapy further developed, even if the results seem conclusive in some CF patients or other, who do not hesitate to go to GEORGIA or POLAND in order to have a phage therapy? Why do we not contact these specialized institutes in order to obtain collections of phages for establishing treatment? What are we waiting for to authorize the use of this therapy? Thank you.
29.07.2014
Salt treated pool
Hello I have a 21-months-old little boy. I would like to know if I can swim him in a pool treated with salt. What is the difference with chlorinated water? If it is possible, what are the precautions to be taken? Thank you
29.07.2014
Last results of the phase 3 cinical trial VX661 and ivacaftor
Hello could you inform us regarding results of the clinical phase 3 which has just ended with patients homozygous for the F508del mutation and performed by the Vertex company. Thank you
29.07.2014
Hygiene
Hello is there a consensus showing that hygiene (particularly in relation to sponges, toilet, standing water in general) have reduced colonization with Pseudomonas aeruginosa? In other words, before, we didn't advise so many things regarding stagnant water. Were the patients earlier colonized? Are the precautions regarding stagnant waters really so effective? Thank you.
29.07.2014
Gardening
Can a person suffering from CF do gardening (contact with soil, grass) without too much risk? I've had several Pseudomonas and aspergillus infections. Thank you.
29.07.2014
Garden hose
Can we fill a small pool for a 2-year-old CF child with water from the garden hose? I feel that the hoses are real nests for bacteria, with stagnant water and are often in the sun. .... thank you
29.07.2014
Beach
We were told that our child could swim safely in the ocean but can he play in the sand at the beach? The beaches are often not very clean when we dig a little, the sand is humid and potentially contaminated with Pseudomonas aeruginosa? What is your opinion? Thank you
29.07.2014
Limestone in faucet
Is the limestone in faucet or bathtubs dangerous for CF children ? Thank you
29.07.2014
Finding of staphylococcus aureus at adult age
Hello, I (female, 28 years old, chronic colonization with Pseudomonas aeruginosa since early childhood) have had for the first time the finding of Staphylococcus aures in the last sputum. Apart from penecillin, there are seemingly no resistances. My health condition is actually quite good, I was able improve my FEV1 from 24% in the year 2011 to 34% FEV1 and with this also reduce my need of additional oxygen via a strong therapeutic regimen (azithromycin orally and aztreonam + colistin inhalative as permanent antibiotic therapy, every 6-8 weeks i.v. with changing antibiotics). My physical capacity is as good as it has not been for years. Should one now react to the new finding or rather wait and see? Many thanks!
29.07.2014
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