Topics

CF patients meetings and organizations in Romania
Hello, I myself have a question about meetings and updates related to patients with cystic fibrosis in Romania. Where I could sign up to receive the data? Thank you!
14.07.2014
Results from Vertex clinical trial for patient with delF508 mutation
Hello I’m a CF patient and I’m carrying 2 different mutations: delF508 and 1717-1GA of exon 11. I would like to know if you have the results of the Vertex‘s clinical trials. Are they encouraging? If not, when will they be available? Best regards
14.07.2014
Magnesium
Hello Following a discussion with Dr Ravilly (ex-Head of medical department, Vaincre la mucoviscidose) regarding magnesium (Mg) in CF, I would like to have an answer from her successor or from the head of research department. My concern is the transport of Mg in the cell (and not only the level of Mg in the blood). Indeed, I already know a little bit about the running of Mg; Dr Ravilly had proposed me to talk about the topic with the medical team who takes care of my son, but they don’t know too much and are not interested. The rate of erythrocyte Mg (not just serum) was done for my son and shows that it is not simply a lack of Mg in the blood but a default in the transport into the cell, perhaps due to a genetic specificity: TRPM6 ou TRPM7. A Mexican study has shown some positives effects of a Mg supplementation for CF patients, I would like to know if Vaincre la mucoviscidose could help a young scientist interested in studying the link between TRPM and CF and the effects of Mg in the treatment of the disease. It seems to me that if is possible to confirm the results of the Mexican study it would be a shame not to benefit patients. Thank you for your kind attention. B.B.M.
14.07.2014
Cayston®
I’ve heard (by a service provider) about a new molecule named “Cayston®” that is used to treat CF adultes againt Pseudomonas aeruginosa. This molecule would be used with a new machine that will arrive on the market (or already has?). This person could not tell me more. I turn to you in order to have more information. Thank you
14.07.2014
Thorat swab Enterobacter cloacae
Hello, I, female, 44 years old, have the following infection of the throat (throat swab): 1. Enterobacter cloacae 2. Serratia marcescens Antibiotic sensitivity has been done in the laboratory. Possible are ciprofloxacin, levofloxacin and moxifloxacin. I have absoultely no symptoms, however a mitral valve insufficiency and a tricuspidal valve insufficiency (risk of endocarditis). Furthermore, often an increased erythrocyte sedimentation rate (20/40), that differs. Question: Is an antibiotic therapy sensible for me? Mank thanks in advance, M.
14.07.2014
MRSA and contact with HIV patients
Hello, I have recently made friends with an HIV positive person and I myself am a CF patient chronically colonized with MRSA. How great is the risk for the HIV patient and which measures do you recommend in order to minimize it? Best regards,
14.07.2014
Fluimucil® (acetylcystein) and / or other mucolytic drugs
Hello, For children suffering from CF, are Fluimucil® (acetylcystein) or other mucolytic drugs in form of tablets or sirup sensible as long term therapy? Can they liquefy the CF mucus or are they not effective? Many thanks!
14.07.2014
Inhalation with salbutamol
Hello, I have 2 questions on this topic... 1. How becomes the inhalation with salbutamol the most effecitve? To mix the drops with NaCl/Mucoclear® (hypertonic saline) and inhale with Pariboy or Eflow or to inhale salbutamol with the Vortex® chamber (about 20 minutes) before the inhalation of the NaCl/Mucoclear®? 2. Should salbutamol be inhaled before every inhalation with Pulmozyme®, can Pulmozyme® be then more effective, as it can go deeper in the airways? Many thanks
09.07.2014
Chronical carrier for Pseudomonas aeruginosa
Hello, My 11-year-old daughter is affected by CF. After a culture of a sputum control, 2 different strains of Pseudomonas aeruginosa (P.a.) were found (P.a. has been found in an irregular way since she is 18 months old). The doctor informed me that he didn't want her to have an intravenous antibiotic cure IV and that he would give her a per os medication only if she has clinical signs (fever, cough) and to pursue the inhalation with colistin twice a day. She evokes problems of resistance to antibiotics knowingly that her last intravenous antibiotic cure goes back up to 2 years and that her last ciprofloxacine treatment goes back up to 1 year. I do not question the competence of her doctor but I'm afraid of the risk of irreversible lung damages? Thank you for the explanations that you can bring me because I am very worried and we want to go on holiday in 10 days to Italy: moment for which she waits for a long time.
09.07.2014
VX-809 research
Hello, in the research news dated 01.01.2013 (here the link to a German website: http://muko.info/forschung/news-detail-und-archiv/detailansicht/article/zulassungsprogramm-fuer-korrektur-des-f508del-soll-2013-starten/17.html ). it has been said, that the market authorization for "VX-809" should start even in the year 2013, unfortunately, until today no furhter news appeared on this. My question is, how advanced is the study at the moment and when can one expect further information? Best regards, H.
09.07.2014
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