EMS training, increased CK value and other side effects
Dear expert team, due to back ache, I think about beginning an EMS-Training (=electro-myo-stimuation). I am female, 50 years old, suffer from CF, my FEV1 value is 65% and I take Kaftrio. During the physiotherapist was taking my story (I told freely all details of my illness), she got more and ...
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 ...
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 ...
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
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 ...
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 ...
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 ...
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 ...
Stem cells from cord blood?
Hello, our first child suffers from CF, and we are expecting our second child (healthy carrier). One reads again and again about advertisment for freezing of cord blood after birth. Do you see a potentially advantage in the (far) future of cord blood respectively cord blood stem cells of a ...
Dear reader, I have read interesting information about research on bacteropphages on Pseudomonas aeruginosa. Is this a study that is going on in Europe?
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