Topics

Research Pseudomonas
Dear expert team, our daughter (10 J) is positive for Pseudomonas. The usual therapies have been initiated. I came across an article, that reports about a vaccination against Pseudomonas: https://www.spektrum.de/news/neuer-impfstoff-gegen-pseudomonas-aeruginosa/776769 Is that serious and how was the development in the course of time? Many thanks
05.07.2021
Vaccination against Pseudomonas
Dear ladies and gentlemen, are there any vaccinations available against Pseudomonas aeruginosa in CF patients?
05.07.2021
Timeframe for influencing the biological processes in the lung
Dear Ecorn-CF team, in this article https://idw-online.de/de/news762933 it says: "Also for the treatment of CF the study gives an important hint: while treatment of older CF-patients is only possible to a small extent, there is obviously a timeframe in smaller children, in order to influence the biological processes in the lungs favourably in order to improve the further course of the illness." As we have a 2-year-old child with CF, I would like to know how this process can be influenced in a positive way. Many thanks and best regards,
05.07.2021
Rapid-Test cross-reactions
Dear Expert-team, in schools Rapid-Testing with Antigen-Tests for Sars-CoV2 is startings. Due to cross-reactions there can be false positive results. Cross-reactions with bacteria and viruses are listed, that are frequently found in CF. Do CF patients have to expect false positive test results? Are there tests that are more suitable, so that one can find a test suitable for the individual colonizations with germs? Many thanks,
05.07.2021
Co-enzyme Q10
Dear expert team, I am suffering from CF and in a recent investigation of my blood, a lack of Conzyme Q10 was found. I found out that Conenzyme Q10 is fat-soluble. Is that the reason, that in case of CF, a lack is found more frequently? Are there any studies on the topic? Can Conenzyme Q be given via an infusion, as I worry that the pills could not be resorbed well due to the fat-soulble feature. Many thanks for your answer.
05.07.2021
Salt preparations with high blood pressure and salt-restricted diet
Hello, I have a high blood-pressure and a salt-restricted diet. During the summer, I have to take salt preparations. How do I deal with this contradiction?
15.02.2021
Intake of Trikafta (Kaftrio/Kalydeco)
Dear experts, I have heard, that some patients change the intake of Trikafta (Kaftrio [Elexacaftro/Tezacaftor/Ivacaftor]/ Kalydeco [Ivacaftor]). Instead of taking 2 pills of Kaftrio in the mornings and 1 pill of Kalydeco in the evenings, they take 1 pill of Kalydeco in the mornings and 2 pills of Kaftrio in the evenings. Are there any concerns about this? I have the impression that I cannot sleep after having taken Kalydeco (Ivacaftor). Therefore I think of changing the intake or leaving out the evening intake of Kalydeco at all. Many thanks for your answer
15.02.2021
Seed ladder (vas deferens) interrupted in a baby
Hello, my son (18 months) has been operated due to a retained testicle and during the procedure, the physicians found that the seed ladder was interrupted for a length of 3 cm. They did not give any further information, only that it could be related to the retained testicle. I found in the internet that it could be a mild form of Cystic fibrosis. That frightened me a lot. Unfortunately we do not know, what about the other side, where the testicle is not retained. My question: can it be that the other seed ladder is normal? And could a mild form of CF be detected by the newborn CF-screening? And in case it would really be a mild form of CF: did my son inherit it from both of us? And would that mean that further children coud inherit CF from us? Or could be then only inherit a mild form of CF? Best regards,
15.02.2021
Candida glabrata
Dear ladies and gentlemen, Candida glabrata has been found for the first time in my airway secretions (CF, 48 years old, female, FEV1 54%, MRGN3/4). I found a study from the university of Tuebingen, Germany from 2016 that drew the conclusion that a chronic or intermittend colonization can lead to a significant loss of lung function. As the fungus is hardly sensitive to Itraconazol, I am a bit worried. Is there any clinical experience on this topic? What kind of symptoms does it cause? How can it be differentiated from a bacterial infection? What kind of treatment is possible? Many thanks for your answer,
11.05.2020
Trikafta and transplantation
Hello, my son is 20 years old, and is a CF patient with one deltaF508 mutations. Due to his extremly worsened lung function, his CF center recommended to take Trikafta. He got a liver transplant in 2017; this is the reason why he should discuss the take with his CF center. The center, however has no experience with transplanted patients and Trikafta. Do you have any information?
11.05.2020
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