Loss of taste / smell
Dear team, I have lost my taste and smell for 10 months now. I am an adult with CF, have polypes, have been operated twice on those polypes and it should not be done another time; because in the MRI it was not looking that bad. You have already answered me in October 2016, and I did everything ...
Sexuality and libido
Hello I'm a 23-year-old CF woman. For 3,5 years I have a boyfriend and I have great difficulty with sexuality: I am more often tired and I have a "sensitive" cervix (inflammation). I bleed after every sexual relation (this problem has been seen and reviewed several times with a gynaecologist and ...
Neglect of therapy by one parent
Dear expert team, I have the problem, that my former partner and father of my children neglects strongly the CF therapy and hygiene rules and my CF son has frequently infections after having visited his father. The actual infection (after 2 visits of a swimming pool with strong undercooling) is ...
Sleep and stomach pains
Hello Our son is 8-months-old. He was diagnosed at birth (deltaF508) and presents especially digestive symptoms improved by Creon (approximately 9000 before cq meal). We are very bothered because he never had a complete night since his birth. He falls asleep alone in his bed but has at least ...
Child in foster care
Hello, my granddaughter is placed in a foster home following a court ruling for ill-treatment. I would like to know the percentage of CF children is placed in foster homes and having a normal life nonetheless. Best regards
CF and the wish to have a family
Hello, I am 29-years old and have CF and for 15 years also diabetes (however, I am in a realtive good health status: FEV1 is differing between 74% and 83% according to infections, allergy against polls). I am very sportive (running, Mountain-biking, sports in the mountains: climbing, walking, ...
Hygiene among siblings
Dear CF team, I am a female CF patient myself and have an older brother, who also suffers from CF. After having talked to my physician I pay attention to not using the same bathroom nor to be near the food of the other one if we meet at family meetings. That means, that we both do not prepare any ...
CF patient who doesn't want to have a treatment
Hello I just want to know if there is a study for the follow-up of CF patients who don’t follow any treatment, even when proposed?
When to tell a child about having CF
When should the child be informed about having CF? Is it better at a young age, when the child cannot ask many serious questions? I am afraid of the Internet. Are there stages in informing? Do I tell everything? One thing is certain, they realise something is wrong at a very young age, even if ...
Share a room
Hello, I would like to know if my little 5 year-old boy with cystic fibrosis may exceptionally share a room with his sister or with a friend during the holidays? Thank you in advance.
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