LIVING WITH CF IN EUROPE… TODAY AND TOMORROW

“Five months after she was born we could finally take Nora home, without pump, baxters or needles…In the meantime she has been operated 3 times, a lot for just a little tyke. But Nora doesn't give in… Super-Nora! Now we learn to live little by little with this disease called Cystic Fibrosis. She still seems strange to us, but we'll do our best to accept it and to live with, because she's part of our precious daughter…”

Mother of Nora, Belgium, 1 year old

“We hope we can meet again and in the future only discuss of moral and social issues instead of keeping our children alive as main priority!” “I knocked on the doors of the authorities every day, before work, after work. They didn’t know my name but they would see me sitting in the corridor and say: ‘O no, CF again!’ and I think they finally helped me to get rid of me. Sometimes it’s very discouraging, especially if you don’t get support from others, but every small sign, every small result, every encouraging word gives you the courage to continue. I believe even one person can change the world!”

Mothers of children with CF in Ukraine after a CF Europe meeting

“Some people would think that being born with CF (or a chronic pathological condition) is unfortunate. Speaking from experience of 30 years now, by no means do I consider myself unfortunate for having been born with cystic fibrosis and having to deal with all of its adverse effects. The only thing unfortunate is that I was born in a country of poor health care system infrastructure, especially related to cystic fibrosis. Every day I come face to face with this poor health care system, and every day I am overwhelmed with feelings of insecurity because of it. The European CF day gives the public the opportunity to be informed about cystic fibrosis, and particularly about the daily hardships in the life of CF patients. The European CF day could also contribute to attaining our goal about equal opportunities of medical care for all patients throughout Europe. Both the quality of life and life expectancy for CF patients will improve dramatically, if they are provided the proper and necessary CF care. Our aim is for all patients throughout Europe to have access to the same opportunities for life (and not in life), to receive the best medical care possible and to look towards the future with feelings of optimism and security.”

Angeliki, Greece, 30 years old with CF

“My parents were told by the doctors that I would live about five years. That was in the beginning of the 1960’s. In the year 2000 I started running with the “Run for hope against Cystic Fibrosis” through Germany, Belgium and France. As I continued running the following years my goal became to run one kilometre for each year of my live, so I could run a marathon at the age of 42. Which I did in the year 2004 in Cologne. The sense of my running is to give hope to many patients and the parents of young patients. I received many positive reactions from patients and parents. By my running I tell them: “You can have a good and fulfilling live with this disease”. I’m very glad that I can bring this good news not only to Germany, but also to Belgium and Europe. I’m very glad that I can carry on the work of Ketil Moe from Norway in his sense.”

Burkhard Farnschläder, Germany, 44 years old with CF

Next... Macedonia

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