Topics

Mutation 2711delT
Hello, I would like to know more about the homozygous mutation 2711delT. Is it a mutation-stop, are there any other people known with this case? Thank you very much for your Response.
30.04.2014
False negative CF screening test
Can you explain how a negative CF screening test (at birth) can be a false negative ? Are such cases common? How can this happen? My son had this test done at birth, it was negative. After four months, and after many visits to the hospital, it turns out that he is suffering from cystic fibrosis.
29.04.2014
What evolution can be expected for CF diagnosed in adulthood?
Hello, I am a 28 year old woman and recently diagnosed with CF (sweat test: 114). I have got nasal polyposis since childhood, I had pneumonia at 24 years and an asthma attack (with bronchitis) at 26 years. Otherwise I'm pretty good. I do not particularly cough and I do not have specific digestive problems. So I guess having a milder form of the disease. However I would like to know if the disease is necessarily evolving and worsening or if I could stay in my current state all my life. Thank you very much.
29.04.2014
Variations of blood sugar values
Dear CF team, I have no proven diabetes in case of CF. The regularly performed OGTT (oral gulcose tolerance test) has been borderline for years, never unambiguously too high. The fasting blood sugar values are between 105 and 138. Insulin donation for the night has been discussed, however the topic was finished quite fast, after my doctor checked the daily variations in the protocol. Nearly continously they are between 60 and 220. Slip-up values around 40 are repeatedly among them. Then the nightly administration of insulin had been abandonned quickly, as the staff of the center feared a nightly hypoglycemia. With bananas and high-calory smoothies I go to sport. However even with this I do not come along very well, as the hypoglycemia gets me after 2 km of running. Do you have any idea for me, what else I could do? Do the high fasten blood sugar values cause damage? Many thanks for your efforts!
29.04.2014
Green stool
Hello, does one have to worry if the color of the stool is greenish? I do however not have diarrhea with that. I did not eat vegetables, either. I am 27 years old.
29.04.2014
Nitric oxide therapy
Hello, are there already any news concerning the above mentioned therapeutic trial? Thanks.
29.04.2014
Pankreatin
Hello, I would be interested in your opinion about the enzyme therapy of our pancreatic insufficient son. He gets Kreon® in a dosage of 4000 untis per gram fat. However, he has often fat in the stool and gains weight awfully bad. How high can the dosage of Kreon® be? Would it make sense to test another preparation? Are there any preparations that contain additionally alkalizing substances in order to intensify the efficacy of the enzymes? Or should one give an anti-acid drug? Many thanks!
29.04.2014
mutation delF508 / R553X
My son (8 years old) suffers for years from gastrointestinal problems. For him as a CF patient, lung problems are not the main focus. He has already had an ileus 2 times (as a consequence resection of 50 cm of the gut), furthermore an exocrine pancreatic insufficiency, an enlargement of the spleen as well as a CF hepatopathy have been diagnosed. Now they recommend to us to have our son put on the list for liver transplantation. We are urgently looking for advice on his specific mutation. Are there in Germany any CF specialists, who have special knowledge about this mutations respectively about this special picture of the illness?
28.04.2014
Research on delF508 mutation
Hello It’s not the first time I ask you a question, and first of all I would really thank you for the help, the information and sometimes the comfort that you bring us through this website. I don’t want to abuse your precious time but could you resume in a few lines the research which is ongoing regarding delF508 mutation. Indeed, we heard a lot about different things, different research (and it’s great!) but all of them do not concern the delF508 mutation and I have to confess that I am confused. Is there also research for patients heterozygous for the delF508 mutation going on? At what stages are the researchers? Could we have a summary on tested molecules and their phases? Thank you in advance for your response. Best regards.
28.04.2014
Meveol®
Hello I have just read: « A new treatment against cystic fibrosis could emerge by 2016. This is a project supported by Bpifrance (bank financing and investment) who just released € 10 million for a new medical program called Alipex. Of the three companies involved in research: Alaxia, a Company from Lyon/France. The role of Alaxia in the project will be to develop the component molecules for inhalation therapy. For the moment, all clinical tests have gone very well and clinical trial for humans should be launched by the end of 2014. » Could you please tell us more regarding this announcement? A drug may it be on the market in just two years? How much credit can you give to this notification? Thank you in advance for your response.
15.04.2014
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