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Topics
- Contact lenses
- My daughter would like some contact lenses and I do not know if it is safe.
- 09.07.2012
- Kalydeco (VX770/Ivacaftor)
- Have just read the devastating news on the CF Trust Forum that NICE (National Institute for Health and Clinical Excellence in the UK) are not going to recommend the National health service (NHS) provide Kalydeco in UK and want to know your thoughts and any suggestions on this to get it available? Obviously as much media coverage as possible I imagine. Whilst NICE relates to England and Wales I believe Scotland and N Ireland also more or less follow what NICE recommends. Although only a small percentage of CF sufferers have the G551 gene the availability of Kalydeco was going to be seen as a major step to a better life for all CF sufferers. To those who do have the gene they have been waiting so long for it to be approved here it is just like being stabbed in the back and given a death warrant. Here is for the first time a drug that would improve and lengthen lives so much and now they are once again being sentenced to a slow, sure death. To think NICE are categorically stating this before the drug is even approved. Only the extremely rich will benefit in UK as far as I can see. It really is heartbreaking. I know in the past this has happened with Cancer drugs etc but sometimes the new drug was only going to add a few weeks to a persons life but Kalydeco looked like it was going to be a new beginning for those who would benefit from it. I believe in UK, according to NICE you could apply to your local Primary Care Trust but we all know they will not have funds. This being turned down will also ask the question of why our CF adults and children should risk drug trials for no benefit to them in the end. This is so unfair!!!
- 09.07.2012
- VX770 and R347P
- Dear Team, I refer to the question you have already (partly) answered before. I think the more concrete questions is: if VX770 will help R117H - how likely is it that it can work on R347P (or any other class 4 mutation which is not a gating/class 3 mutation)? It is difficult to understand the differences in the mutations themselves. I thouhgt that R117H has a gating defect as well as G551D (reduced channel open time), and R347P has a conductance problem. Thank you very much for you answer.
- 09.07.2012
- modeling clay
- Hello, As a Psychologist I work with children with CF, I question the use of modeling clay with children: is it possible to use the same clay from one session to another with the same child? Or better throw it in the end of each session and take a new, unused, at the next meeting to avoid the risk of infection? thank you for your response.
- 09.07.2012
- Pseudomonas colonization
- Hello, Could you please define what is Pseudomonas colonization ? When Pseudomonas is observed for the first time in sputum sample, that it’s treated, that it’s disappeared for a long period, is it colonization ? Is it a primo-colonization? If Pseudomonas is not found in the following sputum samples, is the Pseudomoans always in the patient’s bronchi ?
- 09.07.2012
- pancreas
- I just had the result of elastase in the stool : 461μg / g stool. Does it mean that I have a problem concerning the pancreas? M.
- 03.07.2012
- Bleach
- Is the use of bleach allowed in institutes for children? (Institute of education for deficient children 12 to 20 years) What is its effect on urine?
- 02.07.2012
- CFTR mutation and CBAVD
- My 18 year old son has been treated for a thyroid carcinoma. Before the treatment he had a sperm analysis. The conslusion was a diagnosis of azoospermia related to a congenital bilateral absence of vas deferens. So he underwent an analysis of CFTR gene mutation. A mild CFTR mutation was identified. He has to undergo a sweat test and a genetic counselling. I am worried. Can he be affected by cystic fibrosis? How does this disease progresses?
- 02.07.2012
- Hyperechogenic bowel
- Dear expert team, I am in the 31th week of pregnancy and our baby has been diagnosed to have a mild hyperechogenic bowel. Furthermore, the bowel is slightly extended. The baby gains weight well (at the moment about 2000g) and all the other values are also good. How high is the probability that the baby suffers from CF? Many thanks!
- 02.07.2012
- What is the effect of Manuka-honey?
- Is there any effect of Manuka-honey? I have read that some CF patients eat Manuka-honey...I have read this in connection with MRSA, according to another forum, the quite expensive honey is supposed to alleviate digestive problems. Could you say something about the possible mode of action? Is it possible that at least a part of it is true?
- 02.07.2012
