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Topics
- Vertex - results of a phase 2 study for patients heterozygous for F508del
- Hello The Vertex company has published results regarding patients heterozygous for the F508del mutation, here is the link: http://investors.vrtx.com/releasedetail.cfm?releaseid=862727. It seems to me that patients heterozygous for the F508del mutation could have a potential treatment like the one received by patients carrying two copies of the F508del mutation. This is correct? Could they be included in clinical trials? Thank for your reply. Regards.
- 15.09.2014
- ISET method
- Hello I have already read, with attention, the last answer regarding the subject [http://ecorn-cf.eu/index.php?id=65&L=8&tx_expertadvice_pi1%5Bshowitem%5D=2804&tx_expertadvice_pi1%5Bsearch%5D=ISET], but I want to know if there a place in France where this test can be performed? Otherwise, do you have more information? Thank for your reply
- 15.09.2014
- Suspicion of CF
- Hello on your site again, Still with not that many answers to my questions regarding the diagnosis of my child who is now 15 years old. I'd like your opinion, my son is pancreatic insufficient, so he takes Creon. He had 3 sweat tests all positive, but the genetic test is negative!! He has a deficiency of vitamin k but with weekly oral dose as well with i.m. it doesn’t change anything! His has a clotting problem with a decreased prothrombin time (54%), deficiency of factors II, V, VII, X. We just have consulted a doctor for CF who does NOT exclude CF. We are actually all in doubt because both fecal elastase and coagulation factors rise and decrease. It’s always changing !!! What do you think ??? Can you tell me more??? I cannot stand any more, after 8 months of exams without accurate diagnosis !!!! Do you think he could develop a new form of CF not yet known? Doctors told me that all is a great mystery !! I'd like to have your opinion please !!!
- 15.09.2014
- Scarlet fever
- Hello, My 5-year-old little boy had the scarlet fever twice in 2 and a half months. He finished his antibiotic treatment on Friday (that he had for 14 days) and he began again to have the symptoms 3 days after the end of the treatment. He has a visit tomorrow morning at our family doctor but can you tell me what the scarlet fever can have as consequence on a CF child and why does it return so often? Thank you in advance
- 15.09.2014
- Hello
- I have one-year-old boy diagnosed with cystic fibrosis at 6 months. We did the genetic test and the result was: M - G 542X heterozygous; 9T. Child‘s doctor says that the outcome would be a milder disease and he does not believe he will have major problems in the future. But another doctor said that whatever the result is this disease is severe. What is exactly this outcome?
- 15.09.2014
- p.F508del
- Hello, We just received the two mutations of our daughter. The p.F508del and c.3140-26A> G (3272-26A> G) Please, what will be the common impacts of these changes even though I know it varies from one individual to another? Thank you in advance for your help and feedback.
- 10.09.2014
- Chestmaster® (high frequency chest wall oscillation)
- Hello, Can we give credibility to CHESTMASTER®? Could it eventually replace physical therapy sessions? Thank you in advance for your answer.
- 10.09.2014
- Living in Morocco
- Hello, I would like to join my husband who works in Casablanca with my CF baby. I wonder if my child's insurance coverage will keep going and what steps are upcoming. Thank you for your help.
- 10.09.2014
- CF mutation
- Hello, can you explain what does it mean that the F508del mutation of the CFTR gene has been found in my 5.5 year-old daughter, and what are the consequences for her respiratory as well digestive health? Thank you
- 10.09.2014
- F508del mutation treatment
- Hello, following the results released yesterday by Vertex to treat patients with two delta F508 mutations, what it about the patients with only one delta F508 mutation? In fact, when our son was born in 2011 we were told that there will be a cure for one of the two mutations, but for now I can find no information about it. Is it possible that the treatment will work as intended by our CF Center doctor? Thank you for your response, best regards
- 10.09.2014
