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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
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- lung
- microbiology
- miscellaneous
- modulator therapy
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- nutrition and GI problems
- oxygen supplementation_therapy
- physiotherapy
- Pseudomonas aeruginosa
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Topics
- Heterozygous fetus of 14 weeks
- After a trophoblast examination the results were negative for Down syndrome, but the fetus is heterozygous for CF. Will the baby always remain a carrier? Is there a chance for the baby to have CF? Its sister is 20 months old and normal. An amniocentesis was performed and a molecular karyotype was checked.
- 29.05.2017
- Experimental treatment
- Hello I’ve got cystic fibrosis with F508del and Q1411X mutations. I was sfor one year and a half under Ataluren experimental-treatment. Yesterday, I was told that the protocol is ending immediately because of a lack of significant results from the clinical trial. Nevertheless, for me I saw a reduction of exacerbations. I’m extremely disappointed by this news. This is my question: regarding my mutations could I take part in ongoing clinical trials? Thank a lot for your answer.
- 29.05.2017
- How to disinfect sofas
- Hello I’d like to know how to clean textiles, in particular pillows and sofas?
- 29.05.2017
- splicing mutation
- Hello I would like to know if there is ongoing research regarding splicing mutations? Best regards
- 26.05.2017
- G542X mutation-PTC 124
- I ‘ve just learned about the clinical development stop for Ataluren. My son has G542X mutation, I would like to know to if there are other ongoing clinical trials? Thank you
- 26.05.2017
- Inheritance
- If I am a carrier (not ill) of a defective CF gene, have both of my parents to be carriers in order to give it to me or is it sufficient, if only one of my parents is a carrier? Many thanks for your answer.
- 26.05.2017
- Correctors and specifical effects
- Hello, I have a quite specific and probably detailed/scientific question: correctors like Orkambi or also the following models VX-661 etc. change also the salt content of the sweat etc, everything is regulated. Has this also an effect of the specific smelling of a human, means his pheromones and therefore his effect on his fellows? Or are the pheromones of each human unchangable and also not really detectable and the concentrations of others, smelling ones, like e.g. changed sweat does not influence this? Many thanks
- 26.05.2017
- Average age
- Hello, my partner suffers from CF and I have a few questions. However the treating physician has no time to answer them. How is the average age that a CF Patient can reach before he needs a transplant? (My partner is 21 years old). Respectively, can he also with his actual lung, if he takes his medication regularly and inhales e.g. reach the age of 70 or is this impossible?
- 26.05.2017
- Circulatory breakdown after rinsing of port-a-cath
- Hello! As my veins are not good and I have many events of blood taking, I got a porth-a-cath. Half an hour later, I get extreme seizures. I have to stretch me and to yawn all the time. I get a headache and I am cold from the inside of me. Also I am bit confused then. However only a bit. Why does it happen? I have a diabetes type 2 and I am in treatment for hepatitis C. Many thanks for your help. Best regards
- 26.05.2017
- Treatment recommendation for persistent Pseudomonas/Staphlococci infection
- Dear team, I have received a lung transplantation (2010) and suffer from CF. For 6 months, my lung function decreases rapidly and since then, it is constantly low. Antibody tests, bronchoscopy, CT and x-ray had already been done. Only in the bronchoscopy, Pseudomonas and Staphylococci could be detected. All other tests had been negative, therefore no transplant rejection. It is still like this, that I do not have secretions, even if I inhale with hypertonic saline 6%, beta-mimectis and tobramycin. Furhtermore I received in the last months 3 therapies with moxifloxacin and icreased cortisone (50mg prednisolone). Azithromycin is for the last 6 months my long term therapy (3 times a week). None of all therapies brought success. The lung function stays on the low level. In former times, I did a lot of sports. This is unfortunately also a burden and no joy at all. Would you have an idea, what the problem could be? Many thanks in advance
- 19.05.2017
