Topics

CFTR related disorder
Since some years, my 12 year old son has recurrent lung infection with production of sputum and slow regression of symptoms. He was admitted to hospital and had several courses of IV antibiotics. Now, for the second time, he had a pseudomonas infection. After many examinations, all known diagnoses have been excluded such as disorder of immunity, primary ciliary dyskinesia and others. Previously he was examined for CF. After extensive tests (for instance NPD = nasal potential difference and ICM = intestinal current measurements) the doctors concluded that he does not have CF. But according to the doctor in our regional hospital, carriers of the CF mutation can have symptoms. Can you, in the case of my son, consider the diagnosis of CFTR related disorder?
05.08.2011
Info or instruction for daycare or school?
Dear, Is there a ready made CF information leaflet for school or daycare? Preferably not longer than an A4 with a short intro of what CF exactly is. Why Creon is important, little specifics you should know (for instance not mixing enzymes with the food). I want to make such an info leaflet, but if it already exists, I don’t have to go through the trouble. Thanks for your reaction!
05.08.2011
Jules the doll
Dearest, At our kindergarden, when a birthday or another important event takes place, the children can take ‘the class doll Jules’ to their house. Can a Pseudomonas bacteria survive on this doll? If yes, what could the teacher do to avoid this? Or should our child not bring this doll to our house?
04.08.2011
Salty sweat
Dear, I would like to know why the sweat of a CF patient is saltier. I do understand the function of the CFTR protein. But that is just my problem. A CF patient has no chloride transport out of the cell. How comes it the sweat is saltier? Thank you in advance! Best regards,
04.08.2011
Flight in an air balloon
Can a flight in an air balloon cause problems for a CF person with an FEV1 of 60%?
04.08.2011
G551D and delta F508 mutations
Hello! My daughter has the above mutations. Can you say something about progression? Could VX770 help? She is six months old. Would an application be too early at this point?
04.08.2011
Pancreas
In me, CF has manifested itself in the pancreas. What is my life expectancy? I am at present 57 years old.
04.08.2011
Connection between albumin and vitamin A deficiency?
Dear team, My current lab values say that both my albumin value and vitamin A level (104 µg/l) are too low. I have been struggling with the vitamin A for a while, despite carrot juice, red pepper, green vegetables, etc. Now I read that albumin is one of the body’s most efficient antioxidants and that it transports and distributes vitamins. Above all, I would be interested to learn whether my vitamin A deficiency could actually be caused by the low albumin levels and whether one can get this under control. For instance with chlorella, which is supposed to have a high amount of beta carotene (pro-vitamin A) and to be able to increase the amount of albumin in the blood. Thank you and kind regards.
04.08.2011
bacteria private pool
Hello, We have a private pool. Despite the usual treatments done, I'm afraid that the water is infected, including Pseudomonas. Is it recommended to perform a thorough analysis of water before each summer through a private lab? thank you in advance for your reply
02.08.2011
Car air Conditioning
Hello, Is air conditioning in cars harmful for CF patients ? Are there precautions to take or is it better not to use it? Thank you for your advice.
02.08.2011
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