Topics

CF testing in Patras, Greece
Where can i get tested for all the df panceratic CF mutations in Patras? Thank you!
28.03.2011
Sweat test in Athens
Where can i get the sweat test and other tests in Athens?
28.03.2011
Nutrition
Hi My daughter - 3 years old - is under good care in the Warsaw Mother and Child Institute - cystic fibrosis department. She doesn't need enzymes. Every day she takes 2 ml AquAdeks vitamins, 6 - 10 ml 10% NaCl, inahaltions from 4 ml 5%NaCl and lung clearing by hand two times a day. So far she is healthy but I have some questions about using diet supplements every day- extra minerals, synbiotics and omega-3. As far as supplements - our doctors say - natural diet will do the job - but it is hard to make a 3 year old eat as much as recommended. The only thing they prescribe is AquAdeks and salt. I trust our medical stuff in many ways but also feel that in some ways they are behind to the more developed countries. I had contact with parents who had to go abroad with their children - and they confirmed this. I can use diet supplements on my own - but would like to hear the opinion of other people or medical staff. Also, I would like to know if it is recommended to use The Vest . Thank you
28.03.2011
compost pile
Our village will hold a briefing to encourage us to make compost. We're pretty reluctant, because we believe that this process is a reservoir of Pseudomonas ... What do you think? Thank you very much.
28.03.2011
Pain
Hello, I am suffering from cystic fibrosis (48 years) and for a few days I have had pain in the sacroiliac joint. I take anti inflammatory drugs but pain is soothed only for a while. Can you explain what I can do? Thank you for your reply.
24.03.2011
Climate
Climate and cystic fibrosis Hello, what type of climate is most advisable for a patient with cystic fibrosis?
24.03.2011
joint pain
Dear team, My joint pain started years ago. Taking ibuprofen the pain usually disappeared after 1-3 days. This time the joint pain has been around for weeks with short interruptions only. In between it became so bad that I could hardly move, additionally, I had a fever. Due to the joint pain and my lung situation I am having infusions at present. The lung has been much better recently but the pain hasn’t disappeared. It comes and goes – and I cannot see any connections with inflammations in the blood or specific drugs. My blood was checked regarding rheumatism, everything is fine. Now I am to get on with ibuprofen and maybe cortisone if the pain doesn’t disappear. Is there anything else I could do? Thank you very much!
24.03.2011
Pancreas tranplantation
Because of the important part of pancreas in the disease, why do not transplant this organ?
24.03.2011
Physiotherapy in private practice
hello, my 16 year old daughter, has CF and makes her physio 2 times a week in the private practice office, where other CF patients often have appointments at the same time. I am very worried about the risks of contamination by pseudomonas. Can she do her physio with a mask? Thank you for your reply.
24.03.2011
Molecules and mutations
Hello Main research studies focus on personalized treatments. But could you specify if - In case of success, will Miglustat and Vx809 be effective only on f508 mutation or all class 2 mutations as d507? - Could PTC124 be effective on the New1 class mutation 1811+1,6 Kb A>G (splicing mutation and not stop codon)? - Would Vx770 be effective only on 551D mutation? Is that sure that patients with the mutation 1811+1,6 Kb A>G that allow production of some protein (even if in New1 class) would never be concern by Vx770? In general, could one say that rare mutations will never have any treatment because no studies are specifically conducted for these mutations? Many thanks for your answer.
24.03.2011
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