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Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
- allergy
- animals_pets
- antibiotic therapy
- asthma
- complementary medicine
- covid-19
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- 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
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Topics
- 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 We don’t hear much talk any more about gene therapy and this treatment seems outdated ...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
- Phage therapy
- Hello, I read your answers concerning the phage therapy, however, reading many articles and getting information in TV-shows [the concrete links are left out her as they were in French], we wonder if due to pharmaceutical lobbying that phage therapy is not used case-by-case. Indeed, only the development of a "cocktail" would seem to be profitable, therefore in Hungary it seems already well advanced. My question is, are there any serious people in France that could be contacted for testing phage therapy against the Pseudomonas aeruginosa?
- 03.05.2013
- Sponges, mops
- Hello, What are the hygienic precautions for the sponges and the mops when we are invited with friends / family? Can we touch a sponge? Can we use a mop in the room where our child is? Do we have to wash our hands after contact with these objects? How to explain our friends that it is dangerous for our child? Many people think we take too many hygienic precautions, that there is no stagnant water at home and that a sponge is not "dangerous" ... If a friend touches a sponge (not necessarily a clean one) and then touches my son, may he be contaminated by pseudomonas? Or should he be himself in contact? The daily hygienic with a CF child is difficult because it is difficult to find the balance between: "he must have a normal life, do not overprotect" and "take care to stagnant water, sponges, sick people, vases, epidemics in winter ....»: what is really dangerous and what is less! Thank you
- 02.05.2013
- Hand wash
- Hello, How can I wash the hands of my 10 months old baby? Is there a risk to wash them at the sink? Should I let the water run before? Is it better to use wipes for baby faces? Thank you
- 02.05.2013
- NO (nitric oxide) Therapy
- Hi! A friend informed me about a new therapy with nitric oxide, which seemed to be tested in Tübingen. Did you hear about it and is the therapy useful?
- 02.05.2013
- pseudomonas aeruginosa
- I heard a German study said that pseudomonas aeruginosa colonization in people with cystic fibrosis depended mainly on their genotype and hygiene measures about stagnant waters were "useless". What do you think?
- 29.04.2013
- Explanation of genetic testing
- Explanation of genetic testing: heterozygous deltaF508 in exon10 and c.1657C>T (p.Arg553X) Hello, the genetic testing of my son showed the following result: "Heterozygous for the mutation deltaF508 in exon10 and c.1657C>T (p.Arg553X). CF has been diagnosed before via sweat test." According to my knowledge until now "heterozygous" means that there are different mutations. In one "gen" the deltaF508 and in the other "gen" the c.1657C>T (p.Arg553X)? Unfortunately I am not able to find anything about the second mutation. 1. Did I understand it right? 2. Could you give me some more precise information about the second mutation (to which class does it belong)? 3. Could you tell me how the effect of both mutations together would be? Many thanks!
- 23.04.2013
