Topics

School trip to bathing lake
Hello, The class teacher of my daughter (CF) is planning a class trip to a holiday camp and the area is just near a bathing lake. I know, that my daugher is not allowed to bath in the lake due to the danger of Pseudomonas. However, is there also a risk of infection if she is only on the grounds? The stay has a duration of 5 days and I simply fear, that my daugher is catching something there but on the other hand she would be very sad if she is not allowed to go there.
21.07.2014
In which plants does Burkholderia cepacia occur?
The title is already my question. I have read, that this germ occurs at the roots of certain plants, however unfortunately not where and in which plants. This would however be very interersting for prevention. I would be pleased, if somebody could answer this question. Best regards,
21.07.2014
Consumption of coffee in case of portal hypertension (male/28-years-old)
Dear expert team, thank you very much in advance for your human efforts! I am 28 years old, male, suffer from CF and have nealry no restrictions in the daily life. I have a secondary, biliary (beginning) cirrhosis of the liver without esophageal varices, however with prolonged portal hypertension, as well as an enlargement of the spleen. My blood values are nearly all within the normal range, however only the thrombocytes are at about 140-150. How is it in my case with consumption of coffee (in the mornings and in the evenings one cup of latte macchiato / 0.2l) and my liver problems, especially the portal hypertension? Can the hypertension in the portal vein increase because of the coffein in the coffee and can it induce esophageal varices earlier than without consumption of coffee? I ask this, because coffee is known to increase the heart rate. I am worried because of this and have imperatively to clarify for me, if coffein can also increase the pressure of other blood flows in the body and if the portal vein is here possibly involved. I thank you in advance from the bottom of my heart and wish you all the best, Best regards, M.
21.07.2014
Is swimming allowed?
Hello I am a 27-year-old mother. My 7-year-old son was diagnosed at birth for cystic fibrosis. I would have a question about the swimming pool. The doctor of the CF center strictly forbids him the bathings. You see how they are at this age: I can't refuse it to him. Measures of hygiene at the end of every bathing are taken (shower, etc.) I had contacts with some people who said that he could go without gravity. What do I have to do? I don't know any more. I do not have very good relations with the CF department of the center of Xxx. I am afraid for my son. I am afraid of the disease. Help me please. Thank you. You can join me by e-mail.
14.07.2014
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
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