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Topics
- Amiloride Inhalation
- My ten-month-old son suffers from CF. He has lung problems and inhales amiloride. I have read on your advisory pages that amiloride has practically fallen out of use abroad because insufficient research has been done on its effects on CF patients. Why is this medicament so widely used in our country? Can you suggest another, more suitable alternative to amiloride or tell me what types of inhalation medicaments are used abroad? My second question concerns the administration of Creon 10000. We administer the medicine according to my son´s weight (9kg, therefore 9 capsules a day) and the medicine is administered in five portions of food. Should the amount of pancreatin derive from the amount of food or from the amount of fat that the food contains? How many grams of fat does one granule of pancreatin help digest when the patient has dysfunctional pancreas? It is usually stated that pancreatin is not necessary when the patient eats fruit. Does this also hold true for the following: bananas, avocados, cooked fruit or preserves, or pure fruit with added maltodextrine? Thank you for answering my numerous questions.
- 13.12.2011
- Pregnancy and CF
- I want to ask whether a person with CF can deliver a healthy child, and what is the percentage of success to get pregnant in CF women. Thank you!
- 13.12.2011
- CF- diagnostics
- Hello, my mum died in 2003 of CF. Where could a sweat test or genetic test be done? Is it paid by health insurance or by a patient? Thanks in advance
- 13.12.2011
- Diagnostics_2
- I am a carrier of the CF gene. During my pregnancy my husband underwent genetics testing in Olomouc and we were told that he wasn't a carrier. We have two boys. One of them is five years old and he has been suffering from a prolonged rhinitis since birth. The rhinitis doesn´t cease during the year. His nose is always runny and the mucus is green or yellow in colour and thick in texture. My son has constant trouble breathing, he has a nasal voice and snores at night. I frequently take him to an ENT (ear, nose and throat) specialist, but his doctor has stated that he doesn´t understand why he is filled up with mucus. My son suffers only from chronic rhinitis, otherwise he doesn´t tend to be very ill. I would like to know if he might have CF, even though my husband presumably isn´t a CF carrier. In Olomouc, the 30 most common mutations are tested.
- 13.12.2011
- Gene Mutation
- I have been diagnosed with deltaF508 and 2789+5G>A gene mutation. What is my future prognosis and is it a mild or a serious CF form?
- 13.12.2011
- Healthy Carrier
- My husband is a healthy career of dF508/non genome. Is he liable to have the same health problems as CF patients but in a less serious form? Can his condition influence his liver function?
- 13.12.2011
- F508del heterozygoty : consequences?
- Hello, I am a 32 year old male in pretty good health, out of curiosity and I did a genetic test through a U.S. site. Among the many results I found to be heterozygous for deltaF508 carrier (30 other mutations investigated, all negative) I read many articles and abstracts of publications, and it made me make a connection with my symptoms and which remained unexplained: - Frequent cough just after the meal time since sometimes - Seasonal bronchitis that required tough antibiotics (I am non-smoker) - And especially has always been constant presence of mucus in the back of the nose / throat and constant need to sniff / swallow / clear my throat, to the chagrin of those around me. Note that my father had the same respiratory symptoms and, moreover, had some problems before having children (made of a varicocele) I am concerned primarily with my fertility. I also had a varicocele. I think a lot of figures on the frequency of deltaF508 in people with CABVD, but never the reverse. I read that "5T allele" is found frequently in these cases, but does not know where to find it in my results (I can search by number of SNPs) I also wonder if there is no preventive things to ENT and Respiratory side, because I feel that my bronchitis are more severe than some years ago. And monitor my pancreas. Who consult for a first time ? A GP (I fear it does not take very seriously my test or not at the forefront of the subject)? A pulmonologist and a urologist separately? Or direct a specialized muco would have all these skills? NB: I live in England but often returns to France. Thank you!
- 13.12.2011
- sticky secretions and salty sweat in CF
- why the secretions are permanently sticky in the nose and the skin is salty
- 07.12.2011
- Studies: nurse and CF
- What are the areas of health where a nurse with CF can work? Such as intensive care units
- 07.12.2011
- Cystic fibrosis in Caucasian populations
- A question is nagging me. Why does cystic fibrosis affect mainly Caucasian populations? Indeed the rate of people affected by the disease is far more important for Caucasians than, for example, Africans. Thank you in advance.
- 05.12.2011








