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Topics
- 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
- girl with CF, monthly period
- Dear reader, My 14 year old daughter with CF had her first menstrual cycle 6 months ago. At the beginning it was not really regular (cycle of 28 - 30 days). The last 2 months the period came back too quickly. After 14 days or 8 days, she has again her menstruation. Is this related to CF? Should we mention this to our centre? Or is this typical for the beginning of the menstrual cycles? Yours sincerely,
- 07.05.2013
- CF
- Can you also have a mild form of CF? I mean that you are not sick even if you have a low lung capacity.
- 06.05.2013
- CF yes or no?
- Hello, My 4 month old daughter has F508del and R117H (7T,9T) What are the risks to have CF? Thank you
- 06.05.2013
- kind of CF
- My husband and I are carriers of delta F508 en N1303K. To what kind of CF this combination of mutations can lead? Assembly or not of the CFTR channel? And is it broken down or not afterwards?
- 06.05.2013
- Combination deltaF508 and R117H-T7
- Dear ladies and gentlemen, My friend and I are carriers of above mentioned combination. We are busy with a PGD (preimplantation genetic diagnosis) process in order to exclude CF but we are also busy with this issue. What if the PGD does not succeed? What actions do we have to take then? We will almost have our third chance. Ending the pregnancy after an amniocentesis in case of CF is one of the possibilities, but not an easy one.... At first we have been told that the risk of a classical form of CF would not be great. Rather the child would have a mild form of CF or no symptoms at all. Can you tell me something about the combination of mutations in the CF-gene? What is the truth? Is it true that the chance of having a child with a classical form of CF is so small that we have to ask ourselves if, for example, to terminate the pregnancy in case of a shown CF is a good decision? Many thanks in advance
- 06.05.2013
- MEVEOL® studies
- Hello Few times ago I discovered the MEVEOL® program, performed by the pharmaceutical company ALAXIA. One publication has been done in 2009. On the ALAXIA’s web site we can noticed that: “ - MEVEOL® is a “candidate drug” effective for treating respiratory infection in cystic fibrosis - scientists from ALAXIA have proved, with the help of recognized experts, its antimicrobial effectiveness on different strains including methicillin-resistant Staphylococcus aureus (MRSA), Burkholderia cepacia and Pseudomonas aeruginosa”. This drug seems interesting….But has the program advanced? Do you have more information? Thank you. Best regards. A patient.
- 03.05.2013
