Topics

Ataluren with stop mutation R1162X
Unfortunately the latest results that were published at the CF congress in Dublin are not really convincing. I have the following question nevertheless: Is it true that the R1162X stop mutation is suited very well or at least better than other stop mutations for therapy with Ataluren? Were any distinctions made between the various stop mutations, and were they also analyzed? Many thanks for your answer!
11.09.2012
MRSA findings
Hello, I have been MRSA positive since 2010 but it is not harmful in my case. After two eradication attempts with Vancomycin (oral) which did not show any effect the bacteria has not been treated anymore. I never had an i.v., and swabs of skin and nose were never taken in my CF center either; the findings were only confirmed by sputum samples. Due to an ambulant operation in another hospital this was done subsequently: nose and skin were negative, only in the throat MRSA was detected. I bought Octenidol® (Octenidine dihydrochloride) immediately and have been gargling regurlarly. Where is the germ located most likely…? In the throat and therefore the sputum samples are contaminated? Or is it rather located in the lung and the germ comes to the throat by coughing up sputum? Is it possible that a professional dental cleaning would help? I would like to go to a rehabilitation center very much.
11.09.2012
Why are Ataluren results considered disappointing?
[In this Q/A two questions were summerized as the given answer was the same, both questions can be read here] Hello, I read about the phase-III study on Ataluren as well as the PTC press release on the website of the German CF patient association, and I do not really understand why the results are considered disappointing. In the group of patients not inhaling antibiotics, the decline in lung function with administration of Ataluren over a one-year period was only at 0.2%, as compared to 7% with placebo. After all, this means that for these patients, their otherwise gradual decline in lung function has come to a standstill (at least for the time of the study). Provided that the patient is not dependent on permanent antibiotics inhalation, this can, after all, make the difference between normal and reduced life expectancy! Could you tell me why the assessment in the report on the website is so decidedly negative nevertheless? Do you know what the next steps are in the development of Ataluren and in how far the developers are aiming at a quick approval? ------------------------------------------------------------------------------------------- Another questioner asked the following question on the same topic: Dear expert team, I would be interested to know what the status quo is concerning the approval of Ataluren. A report I read said it will not be approved now or ever!!, since the results of the phase-III study did not meet the expectations. I cannot find anything on the web about this – neither that it will not be approved nor that the results were not sufficient – not even the PTC website provides any information – only concerning Duchenne muscular dystrophy, for which things do not look so bad I believe. I would also be interested to know whether this drug will then not be approved at all – or whether it will be different in each country and how one can find out about this? My daughter has the f508del and R1162X mutations. Many thanks in advance and kind regards.
11.09.2012
Mycosis
I would like to understand and know why I have freuqently vaginal yeast infections or a lot of vaginal discharge. Is it due to cystic fibrosis ? If yes why and how to avoid it. When I take antibiotics it happens to me, but right now this is not the case. Thank you in advance. Sincerely,
11.09.2012
Mucoclear® (7% hypertonic saline) and physiotherapy
Is it possible to perform physiotherapy immediately after a nebulization of Mucoclear® (7% hypertonic saline) or do we have to wait a longer time for an optimal effect of this Mucoclear ?
11.09.2012
Sweat test 51 - mutation I148T
I have a 16 months old girl with low weight. We have a diagnosis of gastro-esophageal reflux disease since she was 4 months old without vomiting. We did a sweat test in a Thessaloniki hospital with sufficient quantity of sweat and it was borderline with a value of 51. The genetic analysis for 36 mutations (75%) showed heterozygousity for the I148T mutation.The child has never presented any pulmonary problems and her clinical picture in general is very good. We have sent a blood sample to be checked for other mutations and I am really worried. Is it possible for the baby to suffer from CF?
10.09.2012
Risks and infection control recommendations at the hairdressing salon
Hello, are there any infection control recommendations at the hairdressing salon? Should we provide recommendations to the hairdresser? Thank you
10.09.2012
Fertility
Hello, My son (27 months) carries DF508 and G542X mutations. He is doing well, we make physiotherapy 2 times a day, take vitamins, CREON, salts, etc ... Is there the possibility that his vas deferens are well developed? Are there any ongoing studies about fertility in CF patients? Thank you for your answers.
24.08.2012
Negative amniocentesis results - positive sweat test
During my pregnancy the results showed that my baby would be a carrier (heterozygote) - 85% checked. My baby is now 7 months old and the sweat test was positive for CF? Is this possible and in which cases?
24.08.2012
fecal elastase
I would like to ask if any special preperation is necessary in order to examine the fecal elastase in a child? Is it a necessary test in a child with negative sweat test, but with low weight and height and with bronchial asthma? The mother is negative for CF mutations.
24.08.2012
<<  < 170 | 171 | 172 | 173 | 174 | 175 | 176 | 177 | 178 | 179 | 180 | 181 | 182  ...  341 >  >>