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Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
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Topics
- 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 ...
- 01.08.2015
- UVESTEROL®
- Hello, For several years, press reports echo of some dangerousness of the UVESTEROL® (it seems full of dubious excipients). But this vitamin synthesis is prescribed for CF patients. Are these rumors true?Is it a question of dosage? Is it necessary to give uvesterol® ADEC to a pancreatic sufficient baby? Thank you to reassure us!
- 01.08.2015
- Orkambi®
- Hello Has an Orkambi® marketing study been scheduled for heterozygous F508del CF patients? (Excluding gating mutations).And in children under 12? Can you send me the link of the site or sites that allowed you to answer me please? How have other mutations been tested in phase 2? Per class? case by case? Can we expect off-label use to allow precisely to assess the benefits of treatment in each case? Thank you for your response.
- 01.08.2015
- 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.
- 01.08.2015
- Suddenly CF?
- Dear expert team, I suffer from severe asthma, resistant to any therapy, so is the diagnosis named at least. However, I have much mucus for a longer time and have much cough, besides the “familiar” episodes of dyspnea. Now a CT of the lungs had been done at the university hospital and bronchiectasis had been discovered. What is that in detail? Now also a sweat test had been done, that was also positive. I am quite young, however I thought that CF is diagnosed right after birth? I have frequent infections with phlegm in the sputum. Can this be correlated with the supposed CF? My lung function is getting worse and worse by the infections and it takes a long time until it is getting better. Is this typical for CF? Many thanks in advance and best regards,
- 28.07.2015
- MRSA baby
- Course: Our baby has had strong cough at the age of 5 months. By doing a blood cell count, an inflammation has been diagnosed in the body. He got antibiotics and after 4 days the cough went away. About 5 weeks later, he got strong diarrhea. After a week the pediatrician did a stool investigation. Nothing had been found. We were told to wait. After another week without improvement our son was admitted to hospital due to loss of fluids. He got infusions. The diarrhea did not improve and our son did not get any medication, either. Every stool has been investigated. When there was no improvement and he did not get infusions anymore, we were allowed to go. However, MRSA had been found in the last stool. They told us, this would not be a problem, it would go away. It has not been found on the mucosa. The diarrhea is still as strong as before. I suspect that our son got the germ during his hospital stay. And I found out, that he is indeed very dangerous. My question would be, how it can be treated. Everybody says, that it will go away on his own and with the germ also the diarrhea will disappear. However, this cannot be true. The whole gut is involved! And as said before, on the mucosa there is no MRSA, this is a bit striking to me.
- 28.07.2015
- Amniocentesis
- Is always tested for CF when doing an amniocentesis [In Germany]?
- 28.07.2015
- Dietary supplement
- Hello, I was told about dietary supplements (Reliv) that would improve the overall condition in CF; before I start I would like to know if it was known and recommended? Thank you
- 28.07.2015
- Morphine
- 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?
- 26.07.2015
- Playgrounds
- In outdoors parks or playgrounds there are sometimes water and/or “mud corners”. How high is the risk of transfer of pathogens?
- 26.07.2015
