Topics

Orkambi and fatty foods
Dear experts, Our son (1 year old, homozygous f508del) has been taking Orkambi for 3 days. My husband and I were told that he needs to consume 10g of fat with the Orkambi. This is extremely difficult, especially in the evenings, because he simply doesn't have enough concentration to eat calmly. This, of course, causes him a lot of stress. I've tried to find the 10g fat requirement in the literature, but everywhere it just says "fatty food." Does it really have to be 10g of fat? Thank you for your help!
12.10.2026
Health risks in CF carriers (only 1 altered allele)
What changes/risks do CF carriers face? This question is based on the following statements: CF patient education: "Even in carriers, the chloride channels don't function quite correctly." Internist: Preventive colonoscopy should be performed every 5 years instead of every 10 years in CF carriers, even with completely normal colonoscopy results. Reason: increased risk of intestinal polyps and their malignant transformation. Thank you for your response.
12.10.2026
Sleep apnea
Hello, could you provide some information about sleep apnea and cystic fibrosis? I'm currently at my fourth appointment in the sleep lab, and it seems I'll be starting nighttime mask ventilation to treat the breathing pauses during the night. Who else could I contact who has experience with this? What do I need to know about the mask ventilation device? Thank you.
12.10.2026
Routine inpatient admission
Good day, Our 6-year-old son, who has the G542x and E92x mutations, is being considered for inpatient admission every three months. He has chronic Staphylococcus aureus (Pseudomonas has never been detected, but it was treated with IV antibiotics during his last two inpatient stays, based on suspicion). A port catheter is also being considered. The treating physicians are considering the Danish model to slow further progression. Are you familiar with this model? What are the advantages and disadvantages of this proposed treatment approach? Thank you very much for your assessment.
12.10.2026
Make your own kefir
Hello dear Econ team, I have cystic fibrosis, am 61 years old, and suffer from recurring ABPA attacks. I would like to make my own kefir using kefir tubers. Is this possible, or do kefir tubers produce spores that I could inhale? What precautions should I take? Thank you very much for answering my question! Kind regards from S.
12.10.2026
Journey to Thailand
Dear Experts, We are considering a trip to Thailand with our 9-year-old son, who has cystic fibrosis, at the end of December/beginning of January. We're planning a beach holiday. His doctor is very pleased with his condition; he rarely gets sick or even catches a cold. I've already searched online and here as well, but unfortunately, the last post about Thailand was a few years old. I would appreciate your opinion. Thank you in advance. Best regards
12.10.2026
Chance of Cystic Fibrosis
Our son is 16 months old and has not shown any symptoms of cystic fibrosis. However, during prenatal genetic testing, we found that he had inherited two CFTR variants: c.358G>A (p.Ala120Thr) from me and 5T/TG11 from his father. Given these findings, is there a significant risk that our son could develop respiratory problems, male infertility, or any other health issues related to CFTR later in life? Thank you very much for your time.
06.07.2026
Sterilize inhalers in the steam cooker
Hello, we are buying a new kitchen and are considering having a built-in steam cooker installed (NOT a combi-unit with an oven). Would it be possible to use it to sterilize the inhalation equipment for our 3-year-old daughter (who has CF) in the morning and evening? We currently use a vaporizer that does the job, but we could get rid of it and have one less appliance cluttering up the counter... What are people's experiences or recommendations regarding this? Our daughter currently inhales saline solution using the accessories for the Pariboy Junior®. There are steam cookers with a "baby bottle" function, and I imagine that should serve the same purpose as a standard sterilizer, right? If so, I’d appreciate some information on the correct procedure—specifically, whether the equipment always needs to be dried immediately, or if "wet" inhalation straight from the closed steamer is also an option. Thanks!
29.06.2026
Hair loss due to liver cirrhosis?
Hello, Our 18-year-old son has CF-related liver cirrhosis; his liver function tests, vitamin levels, etc., are checked every three months. He takes Kaftrio and Kalydeco. For the past few weeks, he has occasionally mentioned experiencing increased hair loss. I have read that this can indeed occur with liver cirrhosis—though I haven't been able to determine whether such a deficiency symptom can still arise even when supplementation is regularly monitored. The supplement he takes contains the following vitamins and minerals: vitamins A, D3, E, K1, C, B1, B2, niacin, B6, biotin, pantothenic acid, zinc, selenium, and coenzyme Q10. Our son eats a varied and healthy diet, exercises regularly, and is extremely attentive to his health. What is your assessment of this hair loss issue, and are there ways to counteract it? Generally speaking, this is a relatively minor problem, but I fear an 18-year-old might not see it that way. Thank you very much for your reply!
29.06.2026
Asbestos sheets on the neighboring property
Hello, I have a question: we have a very large yard, but at one spot, a neighbor has placed broken asbestos sheets right next to our fence—maybe a meter away. His chickens are now walking all over them. I am really unsure about the level of risk this poses specifically for me, given that I have cystic fibrosis (female, early 30s, good lung function). The good thing is that we hardly ever spend time in that particular area. Our children's playground is about 10 meters away, on the opposite side of the property. How dangerous is this for our health—or specifically for mine? Please give me your assessment, assuming these really are asbestos sheets.
29.06.2026
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