Topics

Hygiene among siblings
Dear CF team, I am a female CF patient myself and have an older brother, who also suffers from CF. After having talked to my physician I pay attention to not using the same bathroom nor to be near the food of the other one if we meet at family meetings. That means, that we both do not prepare any food. This has great conflincts as a consequence, as my brother thinks I am exaggerating. However, my physician recommended it to me. Do we really exaggerate or do we follow the right hygienic measures?
16.06.2015
Disinfection of poolwater
Hello dear expert team, First of all many thanks that you are there with your advice. Now to my question. We will install in the summer a pool with a diameter of 5 m. Last year, the water had been disinfected with chlorine, that worked more or less well. Now we have heared about disinfection with active oxygen and about disinfection with salt. Hereby, the salt is put into the poolwater and is changed via a pump and a chemical reaction (I hope that I understood everything right); the salt content would be with this method at 0.4%. Could you give a recommendation, which procedure is the right one? Many thanks in advance.
16.06.2015
CF-diabetes
Does a very strong parncreatic insufficient CF patent will inevitably develop sometime a diabetes? Thus, is there a connection between a strong exocrine impairment and a strong endocrine impairment? If yes, at what timepoint should one investigate a very strong pancreatic insufficient child concerning a diabetes? Would a strong consumption of sugar support the occurrence of a diabetes? Many thanks for your help.
16.06.2015
Bronchiectases
Hello, Is it possible that existing bronchiectases heal up? Our child has bronchiectasis and after having moved to another place we have a new CF outpatient clinic. They say that regular antibiotics administration is outdated? Best regards
12.06.2015
6% NaCl (MucoClear®/Hypertonic Saline)
Hello, Is it possible to overdose when inhaling 6% NaCl or can I inhale as much as I want? Sometimes I inhale 20ml of 6% NaCl per day. Best regards and thank you for answering.
12.06.2015
Staying abroad in Singapore
Is there medical CF care in Singapore in case of emergency (staying for 3 months)?
12.06.2015
Genetic therapy heterozygous DF508
Hello, how far is research concerning DF508-heterozygous patients? Are there first study results, when can one expect a licensing in case of promising results? Thanks!
12.06.2015
Transplantation
Hello, if a CF patient undergoes lung transplantation, will the new lung also suffer from more and more mucus? Therefore, will the CF damange the new lung the same way as the former lung? Can one transplant the pancreas, so that the new organ secretes enzymes in the gut? Thus, could one cure with that a CF pancreatic insufficiency? What does immunosuppression after a transplantation mean concretely for the transplant recipient, concerning infections, quality of life? Many thanks!
12.06.2015
Susceptibility for Pseudomonas
Dear experts, is it true that some CF patients are more susceptible than others? Is there a correlation with susceptibility for PSA and certain genes? Our 2-year-old son with CF has already had two times Pseudomonas aeruginosa in the throat swab. And that, even if we are very cautious and stick to all the hygiene rules. It is frustrating, if one does so much in order to avoid the Pseudomonas and it can be found in spite of this! If one would know, that there would be a genetic predisposition for Pseudomonas colonization, so that one could not avoid it via hygiene rules anyhow, we could relax our efforts probably a bit and could our son let play like the other children in puddles, swimming pools, sand boxes and baby pools….? Many thanks for your opinion.
12.06.2015
Μutation combined with polymorphism
I am 14 weeks pregnant and I have a 4 year old son. During the genetic testing I was examined for 90% of the CF mutations and I was found to carry: c.1584+12T>C (rs193922502), along with the non pathological polymorphisms p.V470M (rs213950,c.1408G>A). My husband was detected to carry the c.1522_1524delTTT (p.Phe508del), rs121909001. The examined sample carried the genotype Τ9/Τ7 & TG10/TG11 in regard to the gene regions T & TG. What are the chances that the fetus will have CF in a severe or mild type, or present other problems (it is male). What about my son? (He is perfectly healthy, has never received antibiotics, but is not tested for CF). Thank you, A.
12.06.2015
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