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Topics
- Mutation T338I
- Hello My son aged 22 months was diagnosed three weeks after the postnatal test. He has the G542X and T338I mutations. The geneticist we encountered explained that this was a rather mild form of CF. Our son has five airway clearance sessions per day, salt and vitamins ADEK, no pancreatic enzymes. He goes very well, never had bronchitis. I find the treatment heavy for a child who doesn’t look sick. I quite understand the protocol but eventhough I know that we don’t have enough elapsed time and that each case is different are you able to tell me a bit more about his mutations, if other patients in the world have the same mutations as my son’s and what is the progression of the disease on them. Thank you in advance for your answer
- 23.12.2013
- Types of CF
- Are there several types of CF? If yes, which ones?
- 23.12.2013
- Need to be answered
- Hello Here I ask myself many questions. My girlfriend is hospitalized since Aug 21th. She has a big problem of breath (shortness of breath), that is the reason why she’s still hospitalized. Last week she made tests: Gastroscopy, liver ultrasound and blood withdrawal. Gastroscopy shows an inflammation of the stomach and regarding ultrasound, she will get the results around the 22nd. Her stomach inflammation is due to what? About 2 weeks ago, she had already a first ultrasound of the liver. The liver was a little big. She has got an IV: is this to treat an infection or is it for something else? She also often feels nauseous. The only thing I know is she is short of breath. What does that mean exactly? Is it normal she has been so long hospitalized? I know she doesn’t always tell me everything ... Surely to protect me. So I ask myself a thousand questions ... I read everything I can find on the disease, but each case is different. I hope you can give me answers. Thank you in advance Cordially.
- 23.12.2013
- Life in Quebec
- Hello, I would like to know how it works when we moved to Quebec regarding doctor, health insurance ... Thank you in advance
- 23.12.2013
- Transmission of the defective gene
- My granddaughter has cystic fibrosis. Would it be possible that me, her paternal grandmother, I transmitted it because I'd be carrier of the defective gene that I would have transmitted it to my son? Thank you in advance for your answer.
- 23.12.2013
- CF Screening
- Hello, I’m writing to get some information about CF gene screening. My girlfriend has a family relative with CF and as far as I’m concerned I’m not aware about such a case among my relatives. It doesn’t prevent us from having a chance to have a child with CF if we are both carrier. In doubt, we would like to perform a test to check if we are carriers of this gene, but we are looking for information on the procedures to do it. Could you guide me on the steps / organizations to contact / rules to perform these tests? Cordially
- 17.12.2013
- Combination of mutations and impact on the child
- My husband carries the DF508 mutation and the normal genotype 9T/9T/. I carry in heterozygote status the allele TG11 - 5T at intron 8 of the CFTR gene as well as the normal genotype 5T/7T/. My son carries the allele TG11 - 5T at intron 8 and is characterized as a carrier of a mild CF mutation. What problems can this cause and what should we do now that I am 4 months pregnant?
- 17.12.2013
- Sweat test
- I have a premature baby girl, with a gestation period of 28 weeks and birth weight of 600 gr. Today she is 13 months old and weighs 5,2 kgr and is allergic to cow milk and has gastro-oesophageal reflux. She gains round 250 gr per month. The pediatrician recommended a sweat test to rule out CF. I was tested negative for the DF508 mutation, I did amniocentesis and the baby was tested in the ICU for CF with negative results. I am very anxious and I would like to know what you think. I forgot to tell you that the symptoms due to the bronchopulmonary dysplasia have vanished now. The baby was in the premature ICU for five months.
- 17.12.2013
- Sweat test
- My child is 5.5 years old and sweats too much while sleeping. I have to change clothes 5-6 times a night. I change his clothes and after 10 minutes he is soaking wet. That is why he has frequent coughing and sputum. He started sweating after the age of 3. Up to the age of 3 he had no medication, not even paracetamol. Should we do a sweat test? I, his mother, am a CF carrier at 80% of mutations and his father is negative for CF mutations at 80%.
- 17.12.2013
- smoking passively
- Dear questioner, We have an 8-year-old son with CF. We are both non-smokers. But my father lives since recent time with a smoking woman. Because he takes care a lot of our son, I worry because every time he comes back from my father, our son smells like cigarette smoke allover. We have spoken about this with them but according to them it can do no harm because she smokes in another room. But the apartment is filled with smoke from previous cigarettes. I would like to have your opinion on this because I do not think this is ok. Then I can tell my father about your opinion because he does not listen to us and it gets a bit tensed in our family. Thanks for your reply.
- 17.12.2013
