Topics

How to disinfect sofas
Hello I’d like to know how to clean textiles, in particular pillows and sofas?
29.05.2017
splicing mutation
Hello I would like to know if there is ongoing research regarding splicing mutations? Best regards
26.05.2017
G542X mutation-PTC 124
I ‘ve just learned about the clinical development stop for Ataluren. My son has G542X mutation, I would like to know to if there are other ongoing clinical trials? Thank you
26.05.2017
Inheritance
If I am a carrier (not ill) of a defective CF gene, have both of my parents to be carriers in order to give it to me or is it sufficient, if only one of my parents is a carrier? Many thanks for your answer.
26.05.2017
Correctors and specifical effects
Hello, I have a quite specific and probably detailed/scientific question: correctors like Orkambi or also the following models VX-661 etc. change also the salt content of the sweat etc, everything is regulated. Has this also an effect of the specific smelling of a human, means his pheromones and therefore his effect on his fellows? Or are the pheromones of each human unchangable and also not really detectable and the concentrations of others, smelling ones, like e.g. changed sweat does not influence this? Many thanks
26.05.2017
Average age
Hello, my partner suffers from CF and I have a few questions. However the treating physician has no time to answer them. How is the average age that a CF Patient can reach before he needs a transplant? (My partner is 21 years old). Respectively, can he also with his actual lung, if he takes his medication regularly and inhales e.g. reach the age of 70 or is this impossible?
26.05.2017
Circulatory breakdown after rinsing of port-a-cath
Hello! As my veins are not good and I have many events of blood taking, I got a porth-a-cath. Half an hour later, I get extreme seizures. I have to stretch me and to yawn all the time. I get a headache and I am cold from the inside of me. Also I am bit confused then. However only a bit. Why does it happen? I have a diabetes type 2 and I am in treatment for hepatitis C. Many thanks for your help. Best regards
26.05.2017
Treatment recommendation for persistent Pseudomonas/Staphlococci infection
Dear team, I have received a lung transplantation (2010) and suffer from CF. For 6 months, my lung function decreases rapidly and since then, it is constantly low. Antibody tests, bronchoscopy, CT and x-ray had already been done. Only in the bronchoscopy, Pseudomonas and Staphylococci could be detected. All other tests had been negative, therefore no transplant rejection. It is still like this, that I do not have secretions, even if I inhale with hypertonic saline 6%, beta-mimectis and tobramycin. Furhtermore I received in the last months 3 therapies with moxifloxacin and icreased cortisone (50mg prednisolone). Azithromycin is for the last 6 months my long term therapy (3 times a week). None of all therapies brought success. The lung function stays on the low level. In former times, I did a lot of sports. This is unfortunately also a burden and no joy at all. Would you have an idea, what the problem could be? Many thanks in advance
19.05.2017
Sweat test
Hello, my daughter has had a sweat test in a CF center. I have been told, that for diagnosis only the chloride value was important, this could however take some time. As I am a worrying mum of a perterm baby, one could see my fear and I got the information that the conductivity was about 35 mmol/l. Can I relax a bit or is it possible to have the combination: normal conductivity but pathological chloride? Many thanks for your efforts
19.05.2017
Cleaning of holiday appartment
Hello, many thanks for your support! We would like to go to a holiday apparmtent, soon. As one never knowns, who lived there before (dogs etc.) I would like to know, how I can get the floor/tiles quite sterile. Our daughter is 14 months old, crawls and therefore is in constant contact with the floor. She suckles her thumb and does not take a pacifier. Are there any other things, that we should take into account in a holiday appartment? Many thanks
19.05.2017
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