Topics

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 ...
03.05.2013
IVIG (intravenous immunoglobulins) infusion
At age 25 I had diagnosis of Allergic bronchopulmonary aspergillosis. At 59 my current age I had a diagnosis of CF by a CF doctor. I have a Delta F508 gene and the 5T variant. I also have a Primary Immune deficiency diagnosed by an immunologist. I had no titers to the pneumonia vaccine. In ...
04.03.2013
carriers
Is there anything known about CF carriers? Do they generally have more “CF like complaints”? Or is it a coincidence that CF carriers in our family have more intestinal and pulmonary complaints? Has research on this topic already been done (f.e. abroad)?
05.03.2013
voice and CF
Hello I am a student in audio phonology, and I make a presentation on cystic fibrosis, and the impact of this disease on patients' vocal cords, could you tell me if there are few references in the field ? Thank you!
26.02.2013
Sinus pulsating aerosolsystem
Are there clinical studies about using the pari-sinus with CF with principally sinusitis problems? Is there somebody with experience with the pari-sinus?
04.02.2013
Right heart strain
Dear expert team, My daughter was diagnosed with right heart strain and I would like to ask whether this means her fitness is a bit limited now. Many thanks.
15.01.2013
ions exchange
Hello, my daughter (10 years, suffering from cystic fibrosis) was found during a visit to the emergency (tarchycardia, low grade fever, loss of sight - she saw only black and red, weakness, tremors of the limbs) to have an abnormally low potassium in the blood. Everything was back to normal after ...
14.01.2013
Cause of cough?
Dear expert team, my son (CF, 4 years old, 1.07m, 16.5kg, mild progression so far) rarely coughs when he does not have infections, only during strong physical action and sometimes after inhalation. For some time now, he has also been having a continuous cough (dry nervous cough) that starts ...
13.12.2012
Follow-up question on nasal irrigation
Hello, I understand the problem of tap water potentially being contaminated with bacteria. What do you think about the following alternatives to boiling water: 1) distilled water 2) non-carbonated bottled water Can I use these two alternatives instead of tap water for nasal irrigation or ...
13.12.2012
nasal washing
Hello, We were advised to wash the nose of our 4 month old CF child every day even if he is not congested. What do you think? Could it cause irritation? Thank you
11.12.2012
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