Kalydeco® and salt supplementation
Hello, In case of scorching heat salt supplementation is recommended for all CF patients. But what about for patients on Kalydeco®? Because their sweat normalizes, so we can assume that salt losses are less ...
Urinary incontinence
CF women and CF girls present, with a higher frequency than in the general population, urinary incontinence during exercise. Why? What can we do? Are any cases of urinary incontinence reported among CF young girls? Thank you in advance for your response on this subject little discussed.
More commonly, morphine is used to relieve great suffering. What about for CF people in severe respiratory failure? Can they be treated with morphine if needed? If not, what is the alternative treatment, excluding analgesics?
CF like disease
Hello, What does this diagnosis mean for our child? (cough, bacterial colonization, pancreatic insufficiency) Friends told us that the genetic defect is not located on the usual gene but outside so that a mutation cannot be determined and thus the new therapy options cannot be ...
Suggested sunken chest in case of a child with CF
Dear expert team, our daughter (6-years old), CF, has a slight deformation of the chest. At the last visit in the CF center, the physician in charge spoke about a suggested sunken chest. He said, that one could not do anything against it at the moment, that however, if it would disturb her when ...
Blood pressure
Hello dear expert team! I am taking the drung Candesartan plus for 10 years now. 2014 I have lost my conscious for 2 times, many investigations did really not bring results. Only a suspicon for a vasovagal syncope. My blood pressure is now without a drug too high in the day mean, unfortunately ...
Bone marrow donor
Could people with CF become bone marrow donors?
blood type and cystic fibrosis
Hello It seems depending on our blood type, that we are less or more resistant regarding some virus, some bacteria. Could you please tell me if researches are performed concerning blood type and immunity in CF patients?
Auto-vaccine in case of CF
My daughter (36) is a CF patient and we are urgently looking for new/ additional /accompanying therapies. The up-to now done antibiotic therapies do practically have no effect anymore, as multiresistant germs have colonized the lung. Is there the possibility to produce directly/ specifically an ...
Vitamins and nutritional supplement
Hello, our child tends to an ADHD like behaviour. Often exceedingly restless, impatient etc., in many questionnaires about ADHD a diagnose has been assured. We have been at two specialists, one diagnosed undoubtly an ADHD, the other disclaimed... Because of the illness of CF I prefer the ...
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