ecorn-cf: App. question list

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Vertex-770 potentiator: Dear expert team, my daughters genotype is DF508 and R347P, now that the drug for G551D is going forth for approval because of its effects on the gene. Do you have any further data to support that this drug would also be effective on other class IV types like R347P as I know it has some effect on gene type R117H. Any information on this would be greatly received. Many thanks C.; 05.12.2011

always sick daughter: My daughter is since birth a sweet ‘mommie’s’ child. She was breast fed for one year (with some food supplements) but after that, started to eat less and less and be more and more tired and listless. At the age of 17 months, she even got dehydrated and needed to be admitted to the hospital. The doctors did one test after the other until a sweet test revealed an elevated salt content. The repeat test was even worse. It think the first one was 33 and the next one was 40. They took blood for DNA and 2 weeks later they stated: ‘We did the test for the most common mutations and since she doesn’t have any of these, we think it is psychological. ‘This felt like getting a slap in my face. They never said anything anymore about her runny nose and ears. Since half a year I am very worried. My daughter looks healthy but she is very small: she is almost 2 years old and only weighs 8kg. In the mean time she had surgery on her ears, grummets were inserted and here adenoids where removed. She is not getting better, she still has very little appetite. Don’t you think that she should be checked for another type of CF?; 05.12.2011

healthy carrier: Hello, I am a healthy carrier of delta F508, and I wanted to know if there was no risk of having a child with cystic fibrosis knowing that my husband does not carry the gene! waiting for a response Cordially.; 05.12.2011

City or country?: Due to financial difficulties we may have to move to the country. We live in a provincial city in a flat. At the village there is a garden, flowers and animals. What should I watch out for? What prerequisites are necessary? What must the child avoid? Can this change bring harm to our child?; 05.12.2011

Coughing at night: I asked a question but forgot to mention that my husband has CF. Since a few months he coughs almost every night as soon as he goes to bed, the coughing can last hours, is very energy consuming and results in not enough sleep. Tiotropium bromide inhalation seemed to work for a while but not anymore. Do you have a suggestion. My husband is 56 years old. During the day all goes reasonibly welle, considering the situation.; 01.12.2011

underweight: My daughter is 6 years old and her weight is 13,5 kg/100 cm. Where can I find a good doctor?; 01.12.2011

lung transplantation: Hello, My brother had a lung transplants for CF five years ago, and he had a chronic graft dysfunction for one year. He is on the waiting list for a new transplantation. Is there a lot of patients who have been transplanted twice (for the lung) ? Do you think he will wait for a long time on the waiting list? Is there a kind of priority for patients who never benefited of this surgery?; 01.12.2011

Revelation: Since some months I suffer from secretions in nose, mouth and lungs. I call it secretions and somebody asked me whether I suffer from cystic fibrosis. I started looking on the internet and was wondering at what age do you get symptoms from this disease and what the symptoms are.; 01.12.2011

Antibiotics and dentist: I have CF and use cotrimoxazol as maintenance therapy. I needed a tooth extraction. The dentist wanted to give antibiotics but because I already take antibiotics he didn’t find that necessary. Does cotrimoxazol help when you need a tooth extraction? You cannot take two antibiotics at the same time, can you ?; 01.12.2011