Topics

milica
I have a question whether CF patients are not allowed to swim in stagnant water. And how is it with swimming in the sea?
24.05.2011
Odd behavior of girlfriend with CF
Friendly Greetings, My girlfriend is from the USA, I am myself from The Netherlands. My girlfriend claims she has a heavy form of CF and won't make the age of 26 (currently 24 years old). Also she claims with this she needs to go to the hospital all the time and even gets hospitalized for most weekends and sometimes even the whole week. With the information I found so far, I could assume this could be correct. However the story continues. She also claims she needs to work on her school and homework, while having CF and that it takes her all day up to deep in the night. She claims to do this so she is sooner done with school and then perhaps travel to my country and study further here. A possibility, but not really a fact. She claims that she is very sexually active, but claims with this that she is not cheating on me. Well, this might be a question of trust I guess. But all for a reason that i add this, Ill explain later in this message. She also claims that she can beat marines twice her size (she is living on a US military base due to her father being there, so no training or real skills for this). Well this is very odd, she herself is just 5"2 tall and she really doesn't have much muscles to show for. Besides that CF should make her weaker like my own Asthma does with me. She plays a lot of PC games, which require a lot of mouse usage and typing. Not strange on it's own, but for someone with a heavy form of CF... shouldn't that be near to impossible? And for that matter, she works with programs that need high concentration, she makes things for games. such as tools, walls, and such that is visible for the players in the game. Something rather odd if you ask me with CF, but please do correct me if I am wrong in this. Her drawings she makes on her PC using a special pad to draw on, look stunning and pretty much flawless. Now, this seems to me a nice thing to do. But I find it very odd Now there are a few other odds and ends that are very strange for someone with CF, but more of a private matter. Now I got a tip from a American man, around our age, that claims that if she really is that far with her CF, she should be in a hospital and even unable to play games, make such things, do so much sex, etc. He even said that she most likely would be in the hospital 24/7 unable to do much at all. Now I wish to ask for help in this, to understand this all whether she is right, or these feelings of something being wrong is right. Could I please get for each part a detailed answer, preferred in English. I love her and all, but I can't stand lying and I am not a fool that just buys all this without making sure it is true or not. Thank you in advance. Kind regards, J. M.
25.05.2011
Staffylokock infection we are treating is cronic?
Thank you for a very useful Q&A! My seven-year-old complains with knee and leg pain and that she suddenly feels she cannot walk. She has CF. We do not listen to carefully, but then, I found this on the web (e-corn-cf.eu): CF-arthropathy 2) Episodic (acute) arthritis Hereby it deals in the first row with a typical so-called “CF-arthritis”. Hereby it deals in general with an acute illness. The joint problems occur asymmetrically and affect small or large joints. The complaints last mostly only for a limited time about 7-14 days. One assumes, that the reactions of the joints are caused by so-called immuno-reactions, which are based on the chronic bacterial inflammation of the lung. For making the diagnosis, only few things can be found. On the x-ray, swelling of the soft tissues or effusions can be seen. In the laboratory, negative results for the rheumatic factors occur, in single cases so-called immuno-complexes (ANCA) can be positive. As therapy, painkillers should be used. Of essential importance is an agressive antibiotic therapy. Question: are we given a clue that the staffylokock infection we are treating is cronic? are we given a clue that the x-ray and ultrasound from the last yearly check-up really show bacterial infection? might this speed up how and that we treat this?
21.04.2011
pregnancy
Can CF be diagnosed during pregnancy?
11.04.2011
newly diagnosed patients/year
Does anyone know approximately how many newly diagnosed CF patients there are in the EU each year? Thank you
04.04.2011
Nutrition
Hi My daughter - 3 years old - is under good care in the Warsaw Mother and Child Institute - cystic fibrosis department. She doesn't need enzymes. Every day she takes 2 ml AquAdeks witamins, 6 - 10 ml 10% NaCl, inahaltions from 4 ml 5%NaCl and loung clearing by hand two trimes a day. So far she is healthy but I have some questions about using diet supplements every day- extra minerals, synbiotics and omega-3. As far as supplements - our doctors say - natural diet will do the job - but it is hard to make a 3 year old eat as much as recommended. The only thing they prescribe is AquAdeks and salt. I trust our medical stuff in many ways but also feel that in some ways they are behind to the more developed countries. I had contact with parents who had to go abroad with their children - and they confirmed this. I can use diet supplements on my own - but would like to hear the opinion of other peaople or medical staff. Also, I would like to know if it is recommended to use The Vest . Thank you
03.11.2010
joint pain
Dear team, My joint pain started years ago. Taking ibuprofen the pain usually disappeared after 1-3 days. This time the joint pain has been around for weeks with short interruptions only. In between it became so bad that I could hardly move, additionally, I had a fever. Due to the joint pain and my lung situation I am having infusions at present. The lung has been much better recently but the pain hasn’t disappeared. It comes and goes – and I cannot see any connections with inflammations in the blood or specific drugs. My blood was checked regarding rheumatism, everything is fine. Now I am to get on with ibuprofen and maybe cortisone if the pain doesn’t disappear. Is there anything else I could do? Thank you very much!
20.01.2011
NANA
Dear all, My son is 11years old.CF del F 508/525del T. (on exon 4). What is the prognose for this combination of genas?Hlor in sweat is 65.We leave in small country Montenegro on the Balkan and we don't have big medical centar for CF,so your answer will help us a lot...Thank you!
23.11.2010
Europian Center for Cystic fibrosis
Good afternoon, My name is Kristina and my brother is a CF patient. Can you give a recommendation for a Center for Cystic Fibrosis in Europe, since we are from Macedonia and there isn't any center for CF patients.
11.12.2010
Fertility
Hello I was wondering is it possible to be fertile up to a certain age i.e 26 with CF, It's just i've noticed my sperm is different lately compared to the way it was before. Also is there many CF males able to have children naturally? Thank you. Mark
16.12.2010
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