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Topics
- Fibroscan exams
- Hello, is there any experience with Fibroscan® liver exams in Cystic Fibrosis?
- 07.09.2010
- Face mask safety
- Dear expert team, How far-extensive is the protection of a face mask (3-layer, non-sterile, bacteria filtration performance higher than 98%)? I am particularly thinking of fungus spores (e.g. major amounts of dead wood or similar that have to be moved). Kind regards Susanne (CF/Tx)
- 07.09.2010
- Artificial pancreas
- I just read in [an online news magazine] that the development of an artificial pancreas is making progress. Will this artificial gland possibly be an option for CF patients in the future? And how do I have to imagine this – can this only affect the insulin/glucagons balance and hence treat diabetes? Or can it even control the lipase, amylase, and protease release, and hence enable somewhat of a normal digestive process?
- 07.09.2010
- PTC124 study
- Hello, I heard about a PTC124 study. My daughter is five years old and has the R553x/IVS8-5T-TG12 mutations. Could the above medication help her? How far advanced is the study by now? Many thanks. Kind regards C.M.
- 07.09.2010
- Air conditioning
- Dear Expert team, what is the recommendation for air conditioning? Are there differences between air conditioning in cars and for instance in hospitals? Can we use air conditioning in our car without any preoccupations? Many thanks
- 07.09.2010
- R553x/IVS8-5T-TG12
- Hello, concerning the mutations mentioned above, we have been told repeatedly that this most likely means mild progressions of CF. But what does that mean? Does my daughter have a normal life expectancy? She is five years old and does not show any effects in the lungs or other organs. She was diagnosed by chance. She was supposed to get her genetic type for alpha1-antitrypsin insufficiency determined since the laboratory told us she had antitrypsin insufficiency. Since the antitrypsin genetic type was normal in a second test, the blood was examined further, which showed the above mutations. Many thanks C.M. 2nd question on this topic: Hello, we have been told repeatedly that our daughter has the R553x/IVS8-5T-TG12 mutations and hence a mild form of cystic fibrosis. Do these mutations already mean a higher life expectancy, or can one even reckon with a normal life expectancy? Can these mutations potentially lead to asthma or asthma bronchialis? Many thanks C.M.
- 06.09.2010
- Germ colonization with atypical cystic fibrosis
- Hello, is the probability of germ colonization as high in atypical cystic fibrosis (R553x and IVS8-5T-TG12 mutations) as in typical cystic fibrosis? Many thanks. Kind regards C.M.
- 06.09.2010
- Progression with R553x/IVS8-5T-TG12 mutations
- Hello, My daughter has been diagnosed with atypical cystic fibrosis. What does that mean? Do you possibly have any experience with the mutations mentioned above? Many thanks C.M.
- 06.09.2010
- 3 sweat tests – 3 different results, part II
- Dear Dr. Sommerburg, I am submitting my question again, since it was not transmitted completely the first time. My four-year-old son was admitted to the hospital with obstipation. Upon admission, his stool values were at 207 ug/g and the sweat test (sodium iontophoresis) at 30 mmol/l. Further tests during his stay – after purging measures with the help of Practo-Clyss®) – returned the following values: stool < 50ug/g; sodium iontophoresis 49 mmol/l. The head physician recommended further tests after two weeks. We had those done now, with the following results: stool at < 50 ug/g and sodium iontophoresis 38 mmol/l. The head physician thinks all these values are within the normal range, except for the stool values. He suspects those to be only temporary, though, due to preceding infections, one asthma attack and stomach flu. He ascribes the differing sweat test values to my son’s condition on the days of testing. Can I assume that everything is okay, or what should I do now? My pediatrician is trying to push me into the CF direction and urging me to take more tests. I would be grateful for a quick answer. Kind regards
- 06.09.2010
- MRSA- germs
- About 2.5 years ago I had an empyema of the knee joint because of MRSA after an injection and had then be operated 9 times on the knee and femur. It has been treated in the beginning with Linezolid (without success), then with Vancomycin. Discharge of the hospital after 3 months. After a rehabilitation and longlasting physiotherapy and hard training I am able to walk again and to bend the knee to 110 degrees. Sportive activities like before the infection (jogging etc.) is not possible anymore. My question is, if there is the possiblity that remaining MRSA-germs could have encapsulated in the joint or the thighs, which could be probably getting active again at a knee-prosthesis operation, which is probably necessary in the next years? Is it realistic at all that after the time-interval of 2.5 years bacteria could still be encapsuled in the leg?
- 06.09.2010
