Topics

Auto-vaccine in case of CF
My daughter (36) is a CF patient and we are urgently looking for new/ additional /accompanying therapies. The up-to now done antibiotic therapies do practically have no effect anymore, as multiresistant germs have colonized the lung. Is there the possibility to produce directly/ specifically an auto-vaccine out of these germs? If yes, who can take these germs respectively can isolate them? In the internet I could only find in the laboratories sample taking and production of auto-vaccines out of stool or urine. Which I consider to be too unspecific at the moment in case of my daughter. I ask for advice and support, as the situation is really critical by now.
06.05.2015
CF medical insurance coverage in EU
I will go from Russia to Budapest (Hungary) for working reasons, soon. My wife has CF. Me and her, we will work in Budapest and have a health insurance. How is the needed medical care there? What about drugs (Pulmozyme and Tobi), does it mean it is covered by the health insurance or do we have to pay it ourselves? Which steps do we have to do for the beginning after the movement? Shall we have all results and medical letters translated from Russian to Hungarian?
06.05.2015
DF508 carrier
We proceeded with my husband to check the CFTR gene for CF mutations – 38 mutations, approximately 80% of the mutations. I was found to be a carrier of the DF508 mutation, whereas my husband does not carry any of the looked for mutations. There is a 1/500 chances to have a child with CF. Do you think we should be further tested?
06.05.2015
Sweat test 3 times borderline
Hello, my son, 3-years-old, has had a sweat test for 3 times. Always in the borderline zone. Now a genetic investigation is done. The physician said, however, I should not get upset, this would not have any meaning, yet. Why can these tests be in the borderline zone and there is no illness underlying? Thank you
17.04.2015
Really CF???
Dear expert team, I am 30-years-old and suffer (allegedly) since my 17. birthday from therapy-resistant asthma. I have about two pneumonias every year without all the other infections. Now several times Pseudomonas has been detected and one speaks about a chronic colonization. Now I have been at a university hospital (pneumology) to have a sweat test done. This has been positive two times. What shall I do? The pneumologist at the hospital said, a CF specific therapy would now begin for me. Should I really suffer from CF? What does Pseudomonas mean for my prognosis? I mean I am 30 years old and not a child anymore. Can a CF still be diagnosed at my age? Openly speaking, I am really afraid of the diagnosis. One always hear about CF patients, who are undergoing a lung transplantation and depend on oxygen. Can one suffer from therapy-resistant asthma and CF? Best regards,
17.04.2015
Genotype F508del/1717-1G>A and clinical trial
Hello, First thank you for your site and your answers! Here's what I read in the search results. "Currently, four Phase 3 studies are underway for VX-661 (100 mg once daily) in combination with ivacaftor (150 mg every 12 hours). One of those studies is in people with two copies of the F508del mutation. The other three studies will enroll people with cystic fibrosis who have one copy of the F508del mutation and a second mutation that is either a gating mutation, residual function mutation or a mutation that results in minimal CFTR function". So my question is this: as being compound heterozygous with the mutations delF508 and 1717-1G>A, could I possibly be part of this test? In advance thank you for your reply. Yours
06.04.2015
Amniocentesis
I am a carrier of the CF mutation N1303K, and more specifically of the heterozygote mutation N1303K (c.39C9, exon 21, Genctype IVS8 polyT:7T/9T). I have been checked for 46 common mutations (greek panel). I am 13 weeks pregnant. My husband will be checked, but we will have the results in one month. In case my husband is a carrier will the amniocentesis show for a 100% if the fetus has CF?
06.04.2015
Question about finger clubbing
I am 22 years old and recently my doctor noticed that I have finger clubbing (I never suffered from serious respiratory infections, nor do I have an important medical history). I did blood and urine tests, a chest CT, a spirometry, a thyroid check, heart and abdominal echo, and an ECG, without any pathological results. My doctor concluded that it is a case of idiopathic finger clubbing. During the investigation I consulted a pneumonologist, who did not rule out the possibility of CF (although he thinks it is very unlikely). The only symptom I can report is that I have many secretions, without coughing. I have stopped smoking since two weeks ago. Should I get tested for CF?
02.04.2015
Meaning of MCT oil (Medium Chain Triglyceride)
Hello, I discovered the existence of these oils by chance, educating me on the composition of coconut oil that I often use. I was challenged, of course, by mentioning their interest in the context of poor absorption of lipids and thus of cystic fibrosis. But, in addition, some manufacturer mention their use for weight loss (which we really don't need!) because those oils result in a faster satiety. I would therefore like to know if specific research had been conducted on the real effect of these oils (also used, I think, in some infant formulas). Is the reason, that we have never been recommended to use these oils is rather due to their exorbitant price or due to the lack of proven effectiveness? Thank you, in advance, for your clarification. My best wishes for better health every reader!
02.04.2015
Ghrelin (a hormone of appetite)
Hello, I am a mother of a CF little boy who has trouble eating enough, because of a lack of appetite. I know you've already talked about this and that the factors are numerous, but I also wanted to know whether the role of ghrelin was studied in cystic fibrosis. Is it the same concentration in patients who are struggling to gain weight? Is a supplement of this hormone is possible and has already been tried? Thank you in advance for clarification. Best Regards.
02.04.2015
<<  < 67 | 68 | 69 | 70 | 71 | 72 | 73 | 74 | 75 | 76 | 77 | 78 | 79  ...  342 >  >>