ecorn-cf: App. question list

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Furniture of the treatment room: We would like to make our physiotherapeutic section more suitable for CF patients. What do we have to take into account and where do I find information about his? How many rooms do we need? Many thanks!; 22.03.2012

Searching for a dentist: Hello, I am searching for a good dentist for a CF child in our region [comment from ECORN-CF: the question was from Germany, concrete names were left out]. The dentist in our home town and a pediatric dentist refused to treat our son, and sent me to the next university hopspital. There I also have been told, after I have shown the handout from our CF-center (external surgical motor, etc.) that they are not going to do it. They gave me the telephone number of the State Chamber of dentists of our federal state, however, there they did not know either, which dentist is equipped in which way. Where do all the other CF patients go to the dentist? A list in the CF center would be great, however is unfortunately not available, there. Could you help me further? Many thanks!; 22.03.2012

Class II & III muations: I am fairly new to learning about CF but have accepted the baby has this and the mutations are Class II & III. The little one is now 6 months and 2 wks old and so far the health has been excellent, not even a slight cold. The weight gain on average is about 0.64grms per week and his CF clinic are happy with this. He has been on an antibiotic twice daily since diagnosed at 3 weeks and physio twice daily. His motions are normal and started weaning at 20 weeks and Creon not as yet required. I understand that suddenly problems could arise and no doubt will but does this seem a fairly promising beginning for someone with these mutations? When reading about CF and jumping on the CF Forum I can't help but note that most other babies with classic mutations are showing some early symptoms. Being salty has never been an issue either. No sweat test has been carried out but the faulty genes have been identified in myself and my husband and also 2 of my 3 brothers so it is conclusive. Thank you.; 22.03.2012

cf: my brother has Cf F508del/E822X is this considered a mild form since he only has pancreatic insufficency and no other problems?; 29.02.2012

Carrier couple and pregancy_2: We are a couple, both of us carriers of CF mutations (Leu732x & DF508). The results of the amniocentesis (at 17 weeks of gestation) showed that the embryo will have CF. How grave is the combination of these two mutations for the life expectancy of the embryo and the course of the disease?; 29.02.2012

Carrier couple and pregancy_1: I am a carrier of the Leu732x CF mutation and my husband carries the DF508 one after being tested for 95% of mutations. The amniocentesis was positive for CF in the embryo and the pregnancy (normal conception) was terminated. All test were done at Horemion Laboratory. How severe would have been the disease? If after an IVF a new pregnancy commences, how much positive will the detection of the two mutations in the embryo be? Will we have to do as well an amniocentesis or trophoblast testing for CF?; 29.02.2012

Cystic Fibrosis deltaF508/deltaF508: Hello. I am "host family" and I look after a 12 years old CF girl. On her annual assessment, I could read: mutations delta F508 /delta F508. What does it mean? I know that there are several CF. Could you tell me if she belongs to those who have "moderate form", so to speak? Her treatment is: 8 to 10 creon/day, 4 Toco /week, 3 urlsolvans/day, 2 capsules of salt/ day, and pulmozyme every morning. Thank you very much for your reply. Cordially.; 28.02.2012

VX-770: Hello, The VX770 molecule (Ivacaftor) acts on the G551D mutation and, also, positively effects on 9 other class 3 mutations. Which ones? Thank you for your response.; 28.02.2012

moving to Germany: hello, my son has cystic fibrosis and is treated in France since birth. My husband will be transferred to Germany and I want to know whether he can be followed there knowing that I do not speak any German? thank you for your response; 28.02.2012

vertex 770 and r347p: Dear team, my daugther CF has got mutation r347p (class IV). I red that vertex 770 could work on r117h (class IV too). Is the defect of conductance caused by r347p similat to the defect caused by r117h? Is it probable that vertex 770 can work also for r347p? In case it works for r117h, will it be possible to have vertex off label for my daugther and, in general, for patients with class IV mutations other than r117h? Thank you! a.; 28.02.2012