Topics

Hygiene
2 patients aged 9 and 13 will attend the same gym but will not be in the same classes. The question is: should we pass a surface disinfectant on the beams and rigging they have used after every session? One girl is chronically colonized by Staph aureus and X maltophilia, the other by Staphylococcus aureus and Achromobacter xylososidans. None harbors pseudomonas. Thank you
29.07.2013
Life expectancy, male fertility
Today life expectancy is what age? Can we have children and being a man with the disease (without adopting or use medicine)? Thank you for you reply
29.07.2013
Crataegus
Hello, Several years ago, a study group in Gießen [Germany] showed in a small study a positive effect of Crataegutt® [crataegus] on the chloride channel in CF patients. What is the current status? Formely, I was a participant of the study and maybe I would like to repeat the tests, i.e. take one tablet of 450mg crataegus twice a day in order to find out if the effects mentioned in the study (e.g. weight gain, better stool consistency) can be observed in my case. Is this procedure acceptable? I am doing very well, almost healthy lung function, Elastase at 250, „normal life“. Many thanks.
29.07.2013
Barbecue
Hello, I wonder if it is a risk to have a barbecue in the presence of a CF child under age 14 months? Regarding to the smoke. Thank you for your reply.
29.07.2013
how serious
my daughter has G551D and 3659del c. How severe is this?
29.07.2013
CF and no reason for infertility: urgent, please!!
Hello, I am 23 years old and try to get pregnant since about 5 years, I have run through all investigatons and also laparoscopy has been done, with my husband (non-CF) everything is o.k. My hormones are super, both tubes are pervasive and free, bood test showed that I have an ovulation all the time, my uterus mucosa is buidling-up very well, my value of the anti-müller hormone is very good, my menstruation is regular, so there is until now no reason for this. 1. The sole thing I find striking is that during the first 3-4 days of my menstruation very much viscous mucus is getting out which is colored by blood, it is nearly like chewing gum and it is sometimes about 30-40mm long, can this be a hint that my cervical mucus is too viscous? And I have had an insemination, however, unfortunately it was negative, 2. or can it be that in the tubes, when an ovulation takes place, the ciliae and the fluid that transport the egg towards the uterus are thickened or stick together due to the CF, that even if always an ovulation takes place it is however not transported because everything is viscous in the tube? I can not imagine any other thing why it is not happening. Could you please give me some information on my two questions?
24.07.2013
Swimming after lung transplantation
Hello, I would like to know if and when one can go swimming after a double-lung transplantation. In an outdoor swimming pool / lake / indoor swimming pool? And where is the problem in general? Thank you!
24.07.2013
Combination of mutations 5Τ/7Τ/9Τ
I have a three year old son (born premature and hospitalized for 2 weeks without respiratory problems). During my pregnancy I and my husband were checked for 36 CF mutations plus for 5T/7T/9T. I was found to be a carrier of 5T and 7T mutations and my husband of 7T and 9T (at intron 8). We were told that if the gene in people with CF were a cassette with the tape torn, in our case most of the tape would just be folded! My son generally looks healthy, but his height and weight is at the lowest growth curves, while I have observed that his sweat is very salty (compared to mine). I would like to know what kind of problems do the possible combinations of the above mutations cause, if the testing we have done so far is adequate, if there is a chance we may be carrying more mutations (I and my husband) and finally if we should choose IVF in case we want a second child. The testing was done with pcr method, what are the chances for error?
24.07.2013
contraception in cystic fibrosis
Is there a special recommended oral contraceptive in cystic fibrosis?
22.07.2013
Cystic fibrosis
DEAR EXPERT TEAM I would like to know more about the availabilty of Kalydeco® in Bulgaria and if there will be any point for someone suffering from CF with the mutations 621+1G/T, N1303K to try this medication and also if not suitable what other treatment should we look for in order to keep quality of life better? LOOKING FORWARD FOR YOUR ANSWER G. Y.
22.07.2013
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