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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
- inhalation
- lung
- microbiology
- miscellaneous
- modulator therapy
- MRSA
- nutrition and GI problems
- oxygen supplementation_therapy
- physiotherapy
- Pseudomonas aeruginosa
- psychosocial
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- swine flu_novel influenza
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- ventilation
Topics
- Cystic fibrosis and veterinary practice/clinic (infection)
- Hello, Can it be recommended for a CF patient to work in a veterinary practice? A friend of mine is opening a practice and would like to employ me on an hourly basis to answer the phone. Unfortunately, the reception desk is located pretty central. Is the risk of being infected with MRSA very high?
- 24.04.2012
- Water tank in VW bus
- Hello, we are planning a trip with the VW bus across Norway for several weeks. For washing the dishes (we would be well dried of course), cleaning, etc. we entertain the thought of using the 40-l-watertank. We would put Micropur into the tank prior to departure to minimise the risk. Is this a risk for an accompanying CF patient? Thanks.
- 24.04.2012
- MucoClear® 6% (hypertonic saline solution) harmful for children under 6? [follow-up question]
- My 3,5-year-old daughter (CF) inhales MucoClear® 6% [NaCl 6%] and tolerates it well, she has no bronchial problems; we do inhale 2 puffs Salbutamol previously to avoid bronchial constriction. Can we continue this way without concerns? Or can this be harmful. It is dissolving very well. Thank you.
- 24.04.2012
- MucoClear® 6% [hypertonic saline] harmful for children under 6 years?
- Hello, I have a question regarding MucoClear® 6% [NaCl 6%]. Since our health insurance does not pay the 3% NaCl our outpatient clinic prescribes MucoClear® 6% for our three-year-old daughter that we mix with 0,9% NaCl. Some days ago we made an inquiry at "ACHSE" (German alliance for chronic rare disease) because we wanted to know why some patients are paid MucoClear® 6% for their children under 6 years and others not. The following answer was given: "The group of people was limited as follows: "For symptomatic inhalation treatment of cystic fibrosis for patients from age six". This prescribability is limited to 15th of August 2012. Then, a new assessment will be done. Up do date there has been no study confirming that MucoClear® 6% is not harmful to health for children under 6 years." The last sentence has irritated me a bit and I would like to ask inhowfar MucoClear® 6% is harmful to health for children under 6 years or what kind of harm it does to children. Thank you for your answer.
- 24.04.2012
- Rowing with CF - yes or no?
- Hello, Is rowing in a river - in my case it would be the Saar [German river] - risky with regard to an infection with problematic germs or not? Many thanks
- 24.04.2012
- No kreon despite cystic fibrosis
- Dear Sir or Madam, I (female, 24 years old, CF) have not taken kreon for about two years. I am 160cm tall and my weight is 53kg (stable) and I do not have abdominal pain at all and bowel movement is well. My doctor is not happy about it [that she is not taking kreon] but I do not see the difference if I take enzymes or not. Is it possible in CF that digestion works well?
- 17.04.2012
- TOBI® (tobramycin) inhalation continuously
- Hello, I have question regarding the inhalation of TOBI® (tobramycin). I am 31 years old and have CF. Bacteria are Staphylococcus aureus and sometimes Pseudomonas. Since 3 years I am inhaling tobramycin using the following dosage regimen: 28 days twice a day 300mg, 28 days without tobramycin. During the break my condition is worsening and I also have problems due to an urge to cough after the break when I am beginning again with tobramycin. I read that some patients only inhale tobramycin once a day but continuously. Is that a way to do it? Is this a new trend? The health insurance does not pay me the continuous use of tobramycin (using it twice a day). To use Cayston® (aztreonam-lysine) or Colistin during the break is not a good option because my Staphylococcus aureus is resistent against them. Is it better to inhale tobramycin continuously or using the on/off dosage regimen? Is it necessary to have a "washing-out cycle" after a couple of months? Many thanks
- 17.04.2012
- DeltaF508/R553X, part II
- Dear expert team, Please allow me a further question concerning the genotype mentioned in the subject line. In “Ataluren (PTC124) induces cystic fibrosis transmembrane conductance regulator protein expression and activity in children with nonsense mutation cystic fibrosis” (Sermet-Gaudelus I, Boeck KD, Casimir GJ, Vermeulen F, Leal T, Mogenet A, Roussel D, Fritsch J, Hanssens L, Hirawat S, Miller NL, Constantine S, Reha A, Ajayi T, Elfring GL, Miller LL; Am J Respir Crit Care Med. 2010 Nov 15;182(10):1262-72. Epub 2010 Jul 9.), you can find the following graphic summary of the test results: http://171.66.122.149/content/182/10/1262/F3.expansion.html . Do I have to interpret from the results that DeltaF508/R553X has reacted worse to the treatment with Ataluren and that it is therefore not sure whether the drug shows any effects at all with this gene combination? Kind regards.
- 17.04.2012
- Travelling with CF
- Dear expert team, We would like to fly to Israel over Easter. Is the air conditioning in low-budget carriers such as Easyjet dangerous for my 11-year-old daughter? Many thanks for the answer.
- 17.04.2012
- cystic fibrosis
- Hello, My 13 years old cystic fibrosis daughter has candida albicans fungus. I would like to know the treatment knowing she is under itraconazole for aspergillus. Thank you for your answer.
- 17.04.2012
