Price of CF testing
How much does the cf testing cost?
Average age
Hello, my partner suffers from CF and I have a few questions. However the treating physician has no time to answer them. How is the average age that a CF Patient can reach before he needs a transplant? (My partner is 21 years old). Respectively, can he also with his actual lung, if he takes his ...
Hello can we really have confidence in medicine? Must we really believe that one day cystic fibrosis will be cured? Is a treatment for Class 5 mutations underway? Best regards.
Prescription of Orkambi® not possible in Ireland
Hallo, my boss in Ireland is a father of a 15-year-old girl with CF. Unfortunately Orkambi® is not licensed in Ireland. Is there a possiblity to get it in Germany for her? What does he has to do to get it? Is private insurance enough or do you have to live in Germany, paying a german health ...
Life expectancy in case of F508del
How high is the average life expectancy in case of F508 del homozygous?
Hello, What are the alternatives for patients when follow up becomes too "complicated" in a CF Centre? What do you recommend ? Thank you
Brushing your teeth
Hello, I'm going to be two years old and I'm starting to be interested in toothbrushes, but as I have CF, I wonder if it's necessary to use mineral water to wet the brush, rinse the mouth and rinse the brush? It makes a lot of mineral water in this case...
CT-scan and x-ray in children
Hello, I wonder about the interest for an annual chest x-ray to an asymptomatic baby, carrying only staphylococcus (methicillin sensibel). Is it possible to perform the x-ray only every two years rather than yearly as long as it remains asymptomatic to limit its exposure to radiation at this age ...
Pseudomonas in gingival sulci
Hello, in the answer from Dr. Mainz about the sinu-nasal inhalation I read about the possibility of the persistance of Pseudomonas in gingival sulci. I have indeed a bad dental status and also some dental crowns made of synthetic material. Now I would like to adress this topic urgently, in order ...
Mutations F508del and R553X
Dear expert team, Our son has been diagnosed to suffer from CF at the beginning of January at the age of 9 weeks, after we had been admitted to hospital with a hemoglobin value of 6. The little boy became 2 blood transfusions and takes zinc tablets since then, as he also had a zinc deficiency. ...
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