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
- girl with CF, monthly period
- Dear reader, My 14 year old daughter with CF had her first menstrual cycle 6 months ago. At the beginning it was not really regular (cycle of 28 - 30 days). The last 2 months the period came back too quickly. After 14 days or 8 days, she has again her menstruation. Is this related to CF? Should we mention this to our centre? Or is this typical for the beginning of the menstrual cycles? Yours sincerely,
- 07.05.2013
- CF
- Can you also have a mild form of CF? I mean that you are not sick even if you have a low lung capacity.
- 06.05.2013
- CF yes or no?
- Hello, My 4 month old daughter has F508del and R117H (7T,9T) What are the risks to have CF? Thank you
- 06.05.2013
- kind of CF
- My husband and I are carriers of delta F508 en N1303K. To what kind of CF this combination of mutations can lead? Assembly or not of the CFTR channel? And is it broken down or not afterwards?
- 06.05.2013
- Combination deltaF508 and R117H-T7
- Dear ladies and gentlemen, My friend and I are carriers of above mentioned combination. We are busy with a PGD (preimplantation genetic diagnosis) process in order to exclude CF but we are also busy with this issue. What if the PGD does not succeed? What actions do we have to take then? We will almost have our third chance. Ending the pregnancy after an amniocentesis in case of CF is one of the possibilities, but not an easy one.... At first we have been told that the risk of a classical form of CF would not be great. Rather the child would have a mild form of CF or no symptoms at all. Can you tell me something about the combination of mutations in the CF-gene? What is the truth? Is it true that the chance of having a child with a classical form of CF is so small that we have to ask ourselves if, for example, to terminate the pregnancy in case of a shown CF is a good decision? Many thanks in advance
- 06.05.2013
- MEVEOL® studies
- Hello Few times ago I discovered the MEVEOL® program, performed by the pharmaceutical company ALAXIA. One publication has been done in 2009. On the ALAXIA’s web site we can noticed that: “ - MEVEOL® is a “candidate drug” effective for treating respiratory infection in cystic fibrosis - scientists from ALAXIA have proved, with the help of recognized experts, its antimicrobial effectiveness on different strains including methicillin-resistant Staphylococcus aureus (MRSA), Burkholderia cepacia and Pseudomonas aeruginosa”. This drug seems interesting….But has the program advanced? Do you have more information? Thank you. Best regards. A patient.
- 03.05.2013
- Cord blood and cystic fibrosis
- Hello, my 20 year-old niece was diagnosed with cystic fibrosis, has many treatments and is awaiting a transplantation, my daughter is pregnant in the 4th month and she wondered if the cord blood would benefit her cousin, if so under what conditions and procedures? Thank you for your reply.
- 03.05.2013
- Future of gene therapy in CF
- Hello. We don’t hear much talk any more about gene therapy and this treatment seems outdated ... Can you tell me a little more: what are the tracks to come in this area? Are there special difficulties to operate this way? Is this therapy still a hope for patients with cystic fibrosis? Thank you for answering to me. Sincerely.
- 03.05.2013
- Aquagenic keratoderma in a 8 year-old girl
- Hello, My 8 year-old daughter has, since December 2012, an Aquagenic keratoderma (she is unable to keep her hands in the water, after a few minutes a painful unbearbale swelling occurs). The dermatologist in the hospital confirmed this, prescribed a sweat test (the result was 26) and now advocates a genetic research of cystic fibrosis in the blood. We are very worried by the upcoming result and of course by our daughter’s future. Are there isolated cases of keratoderma without cystic fibrosis? If keratoderma is the "only" symptom, is it possible that our daughter is a heterozygous carrier of the disease? Or carrying a "less serious" form (if it exists)? Thank you for enlighting us in what seems a long tunnel of uncertainty and fears.
- 03.05.2013
- Ataluren®
- Hello I’ve read that the FDA has not approved Ataluren®. I want to know if there is still hope concerning this molecule. What is the goal of the open study? Best regards
- 03.05.2013
