Topics

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 ...
19.05.2014
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.
15.04.2014
Accomodation of grandaughter in foster family by judicial decision
Hello, I have just learned that my granddaughter will be accomodated in a children's home following a judicial decision due to abuse from her mother. I propose to take care of her for the time until finding a foster family because I'm not in the age to take care of her properly for a long time. I ...
08.04.2014
MDMA and E
Hi there, I wondered if you could please tell me about the effects of MDMA and E from a systems perspective on a person that has cystic fibrosis or if there were any links to literature/information handouts anywhere? I am a health professional that has recently been asked this by an ...
08.04.2014
Medical interruption of pregnancy / cystic fibrosis
Hello, I am at present in the 7th month of pregnany. The baby has just been diagnosed with cystic fibrosis. I would like to know if it is possible to practice a medical interruption of pregnancy.
27.02.2014
Oxygen supply of the lung
My 7-year-old daughter is under medical treatment in Spain since her 3rd month of life. She is suffering from CF and has now a lung volume of 35%. A transplantation is urgently necessary. For 10 month we have liquid oxygen for breathing via nasal tube at home. The physicians have NEVER offered this ...
24.02.2014
State of mind
My brother was diagnosed with cystic fibrosis. He died in 2007. He waited for a transplant… I realize now that I do not have all mourned. I'm still unhappy, I miss him. I’m full of regret! I realized that I needed a psychologist. I'm 35 and I can not move forward ... neither professionally nor ...
13.01.2014
change doctor
Hello, I am the mother of a 4.5 year-old little girl. We got to know that my daughter has CF; she has to take treatment. She is followed up at a female physician X but the concern is that I don’t get along well with her doctor. She speaks to me badly and reproaches that I do not care for my ...
15.07.2013
Disease severity degree
Hello, my 2-year-old CF daughter requires since birth very intensive care. The disease leaves her no lull. Today I am very worried about her life expectancy ... What are the criteria for severity of the illness? Are there still children who die young? Thank you in advance for your answer to this ...
15.07.2013
CF children
What has to be considered in a family with two CF children? How can we live a normal life and protect our children of the exchange of bacteria?
12.06.2013
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