Topics

Mutation
Dear expert team, our daughter has the mutation detal F508 and c.1730A>T. Is there any information about this combination? Thank you
24.10.2019
Inhalative antibiotics during pregnancy
Hello, I am 30 years old and pregnant with my second child. During my first pregnancy I inhaled pulmozyme, aztreonam and hypertonic saline and did not think about it. I took the whole time cefuroxim as an oral antibiotic. During this pregnancy I informed myself via the internet and found reports that dehorted the usage of pulmozyme and aztreonam during pregnancy, now I do not know, what to do. I stopped cefuroxim in august and I am quite doing well. Do I harm my child with the inhaled drugs? My lung function value FEV1 is 84%. In my center I unfortunately get only insecure answers, as I would be the first pregnang woman for them. Many thanks for your answer.
24.10.2019
Effects of atypic CF F508del/p.Thr582Ile
Dear expert team, I am 20 years old and a few years ago, the above mentioned mutation has been found, however the physicians were not able to give me a real prognosis. My sweat test was inbetween normal and pathologic. The mutation had been found after I had several pancreatitis episodes, however several anatomical anomalies had been found to be the reason for it (among others narrowing of the ductus and a pancreas divisum) and after an operation I had no symtoms anymore. All my lung function test had been normal so far and until now I did not have any problems with mucus in the lungs or problems to breathe, even when I had a cold that was not a problem for me. I would be interested if there is any information about this mutation. Best regards,
24.10.2019
Orkambi or Symkevi - contraception
Hello, I am thinking about changing from Orkambi, which had a good effect in my case, to Symkevi. In the studies it could be shown that the increasement of the FEV1 lung value is even 1-2% better compared to Orkambi and there should be less side effects. Now my question: can I switch again to hormonal contraception (the pill) if I take Symkevi instead of Orkambi? Many thanks
01.04.2019
W1282X und R347P
Dear expert team, what is the latest research concerning the above mentioned mutations? Will there be any drugs soon that correct the genetic defect? Thanks
01.04.2019
Genetic therapy / coloscopy of the large bowel (organoids)
Dear experts, in facebook, many parents from Russia want to have a test done at the CF Center in Leuven, Belgium (coloscopy of the large bowel) in order to know, whicht gene technique is suitable for their child with CF. How realistic is that? It should not cost anything. Do you have any further information? Many thanks
15.02.2019
Candida auris in the sputum
Dear expert team, if there is Candida auris found in the sputum for the first time, should one react to that? What would you propose concering diagnostic and therapy?
15.02.2019
Stenotrophomonas maltophilia
Dear expert team! this germ can be found in the samples of my son for a longer period of time. Does it make sense to treat? Many thanks
26.10.2018
CFTR correctors
Dear expert team, on the 27th of july 2018the European committee for human drugs has licensed a new drug for delF508 and delF508+residual function mutation. Is this drug also licensed for patients with a residual function mutation or only in combination with delF508? Especially for the rare group of patiens with residual function mutations it is nearly impossible to do an in-vivo study, which seems to be mandatory for the European authorities in order to license the drug. Furthermore the group of the residual function mutations is a rather small group which is not interesting from the marketing standpoint for the companies an therefore it seems improbable that studies or licensing will follow. How do you judge the availability of drugs for residual function mutations in Europe in the near future? Many thanks!
26.10.2018
Symkevi
Dear expert team, what do you think, when will Symkevi be on the market in Germany? I read in some articles that it should be more efficient than Orkambi (2% more increasing of the lung function compared to Orkambi). Also the side effects seem to be markedly less. Furthermore, if the combinations of 3 will enter the market sometime, one would be already on Symkevi (combination of 3 consists of Symkevi and another drug). Do you habe any data? Are the first studies on the combination of 3 finished in January (clinicaltrials.org)? Do you think one should change to Symkevi or go on taking Orkambi (thanks to Orkambi 10-12% more lung funciton) Many thanks,
26.10.2018
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