User login
Enter your username and password here in order to log in on the website:
Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
- allergy
- animals_pets
- antibiotic therapy
- asthma
- complementary medicine
- covid-19
- diabetes
- diagnostics
- drugs side effects
- drugs under development_genetic therapy
- ENT
- general aspects
- genetics
- health care
- hepatobiliary disease
- hygiene
- i.v.-lines
- inhalation
- lung
- microbiology
- miscellaneous
- modulator therapy
- MRSA
- nutrition and GI problems
- oxygen supplementation_therapy
- physiotherapy
- Pseudomonas aeruginosa
- psychosocial
- public facilities
- recreational activities
- reproduction
- research
- social law
- sport
- swine flu_novel influenza
- transplantation
- travelling
- vaccination
- ventilation
Topics
- Orkambi® Side Effects
- Good evening Do you have information on the side effects of this treatment (Orkambi®) available in France since shortly but already widely distributed in CANADA or the USA? The side effects are severe and there is little feedback to take a decision. Best regards
- 24.04.2016
- Asymptomatic patient
- Hello, is it common that a CF patient has neither infections nor bronchial congestion? Our son 16 months is completely asymptomatic since birth. Furthermore, is the identification of genetic mutations 100% reliable? Thank you. Best wishes
- 18.04.2016
- Neonatal Screening test
- Hello, could you tell me if babies with at least one mutation 3849 + 10 Kb> C and another mutation have been diagnosed in Guthrie? Cordially
- 18.04.2016
- Mild CF
- Hello My daughter is 2 months old and had positive genetic testing (deltaF508 and 5T) but has a negative sweat test. She has just been diagnosed with cystic fibrosis borderline (moderate atypical). I wish I could learn more by finding people in the same situation and especially about the changes for the future ... Thank you in advance
- 18.04.2016
- Screening test in pancreatic sufficient people
- Good evening, How can mild cystic fibrosis forms be detected through the neonatal test even though those patients do not have pancreatic insufficiency? I read in an article that patients with pancreatic sufficiency are not detected in the Guthrie test but several times I read the opposite. Has the neonatal test been improved over time to detect these milder forms? Has the test changed? How many false negatives were detected on symptoms in 2015? What are the most often mutations missed by the neonatal screening? Thanks in advance
- 18.04.2016
- Guthrie test in pancreatic sufficient people
- Hello, will pancreatic sufficient babies be detected with the Guthrie test if they have cystic fibrosis? Cordially
- 18.04.2016
- Afflovest®
- Hello Afflovest® is a type of vest available for some time in the US. It seems that the use of this supplement vest of respiratory physiotherapy improves the health of users and their FEV1. How is it that we do not hear about it in France? Are you aware of the use of this vest by individuals with cystic fibrosis in France and their experience ? Thank you in advance for your response.
- 16.04.2016
- Mycobacterium abscessus towards double lung transplantation
- Dear expert team, a CF patient wrote recently to me, that she could not get a lung transplant because of a colonization with Mycobacterium abscessus with recurrent infections (with sporadic finding of S. maltophilia + recently Pseudallescheria Boydii). I do not find any literature about this. A recent review article form the German physicians newspaper, does for example not mention this at all. Is it possible that the patient is believing a hasty assessment? In this context I would propose to widen the search function of this valuable Archive with a similarity function. E.g. the word "abscessus" appears also as "absessus" and "abcessus". It is a pitty if one does not find these (incorrect) variants of a potential life saving article! I would ask you for a quick answer, as she does not tolerate the antibiotics, that have been used for an longer time (Linezolid; peripheral neuropathy), and that had to be stopped a few days ago. Best regards, K.-R. H.
- 16.04.2016
- Sweat test with Kalydeco®
- Dear physicians, my son has the mutations G1244E and R553X and gets Kalydeco® for 2 months. He has had a sweat test result of 110 at his diagnose about 2 years ago and now after two months of Kalydeco® the value went down to 80. My question is, do you think that this is the endpoint or can one still hope, that the value goes down further? We will repeat the test after 2 or 3 further months. My son is 4.5 years old and has been diagnosed at the age of 2.5. How should the value be that he has no constraints because of his CF? Many thanks in advance, D.R. mother of the child
- 16.04.2016
- Healing of genetic disorders?
- The university of Dresden (Germany) together with the Heinrich-Pette institute in Hamburg, Germany, developed a method, that can liberate the HIV code from the human genetic material. It is reported, that with that there is a chance, to heal genetic diseases, as with this method one could influence the human genetic material. Would such a method be possibly able to heal also the illness of CF?
- 16.04.2016
