Topics

Travelling
Is sleeping in a tent allowed for CF patients?
24.10.2019
Rare mutation
Dear expert team, my son is 20 years old and suffers from CF with a combination of delF508 and 525 delT.-Mutation. I am interested to which group of mutations the second mutation belongs (exon 4-frameshift) and if my son was a candidate for the new triple combination of VX-445. Best regards,
24.10.2019
Cbd oil (Cannabidiol)
Have studies been done regarding lung function / CF and CBD oil? Why and why not / what are the possible results?
24.10.2019
Cf and echodens intestines
How many percent of the still unborn babies with CF will show echodense intestines during the 20-week ultrasound?
24.10.2019
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
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