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Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
- allergy
- animals_pets
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Topics
- ABPA and prednisone
- Dear CF-team, My 12-year-old daughter has CF with ABPA (allergic bronchopulmonary aspergillosis). For that reason she is being treated for several years yet with prednisone. This has a consequence on her growth. She is little for her age and I presume she has to take the prednisone. What are the effects in the long runs and could she leave out the prednison for a while? Or is there another medication yet? Thank you in advance for answering my question. Yours sincerely, A.
- 13.05.2013
- Whooping cough (pertussis) and CF
- Dear expert team, on the 3.3.13 I had asked a question on my severe dry cough, many thanks for the answer, Mrs. Dr. Smaczny. In the meantime I know what I have, whooping cough (pertussis) and that with 48 years! What I am astonished about is why the vaccination record is not check routinely, like a check list. I have never been vaccinated against pertussis. And honestly, I have never thought about pertussis anymore. I know, that the protection is not 100%. 2 of my 3 children had with me pertussis, one child not, even if all 3 had been vaccinated. My next question, if I had pertussis now, can I get it another time or are my antibodies sufficient? Many thanks for the answer.
- 10.05.2013
- Kalydeco® also before 6th birthday?
- My son, 4, CF, has the mutations G551D and dF508. Until now he is doing quite well concerning his general condition, even if he already had to fight strongly in his first year of life. Now I am asking myself if Kalydeco® can be prescribed for him even before his 6th birthday. Finally it is especially in CF so important, to preserve the lung from greater damage. Therefore the sooner the better.
- 10.05.2013
- Treatment of CF in Paraguay
- Is there any caring CF-center in Paraguay?
- 10.05.2013
- VX983
- Hello After VX770, VX809 and VX661, VERTEX announces a clinical trial with VX983 (in combination with Kalydeco™-VX770). This clinical trial concerns patients homozygous for deltaF508. Could you tell me more? Could you tell me if VERTEX has made the deltaF508 mutation its "workhorse" or if there are other researches on other mutations (except the G551D of course) ongoing? Thank you for answering me
- 10.05.2013
- cystic fibrosis and contact with dolphins
- Hello I am a permanent doctor of the Association "Petits Princes", an association that realizes dreams for children with chronic diseases including cystic fibrosis since the age of 25 years. Several children dream of approaching or even swim with dolphins. I wanted to know: 1 / What is the risk for children to catch a germ transmitted by dolphins? (I know that dolphins may be potential carriers of P. aeruginosa in the lung) 2 / And vice versa, what is the risk for the dolphins to come into contact with potentially lung-infected CF children? I look forward to your reply, thank you for your help.
- 10.05.2013
- Potential cystic fibrosis
- Me and my husband are CF carriers. I have the F508del mutation and my husband the R117C. We have a two year-old daugter with a mild CF and a five and a half year-old son with the F508del mutation. Some doctors and genetists say that my son is simply a carrier, even though he has two sweat tests at 69 and 55. Our CF doctor believes my son is a patient, too even though only one of our gene mutations has been identified. Please tell me if this is possible. I strongly believe that my son is ok but I have doubts because of the disagreement of the doctors opinions. I notice that my son's health is excellent. He is now 18 Kgr and 107cm and he had an intussusception at three.
- 10.05.2013
- Elastase
- Hello, Because having a cyst for many years that compresses the pancreatic duct, the gastroenterologist did an analysis of elastase. The result is 543 mg /g. Should we be worried about this or is it just normal? I saw that above 200 = normal subject, but with my 543 = am I wrong?
- 07.05.2013
- Splicing mutations
- Do you know whether there are or there will be clinical trials on CF patients carrying a splicing mutation (other than stop-codons)? Additionally, can you tell me whether VX770 (for G551D mutations) and VX770/VX809 (for homozygous F508del mutations) will be further tested in patients with any kind of mutations?
- 07.05.2013
- Inguinal hernia
- Hello, is a strangulated inguinal hernia in infants, among other symptoms, a sign that should direct the diagnosis towards cystic fibrosis?
- 07.05.2013
