19th of December 2022
Article in the newspaper TO VIMA
"Breath of life for patients with cystic fibrosis"
On the occasion of the European Cystic Fibrosis Week (21-27 November), an article was published in the newspaper TO VIMA on Sunday 4th December 2022 about Cystic Fibrosis. In the article the President of the Hellenic Cystic Fibrosis Association, Spinou Anna, with the CF patients Marilena Tsentidou and Maria Theodoropoulou, described their experiences about the new face of Cystic Fibrosis. Also Mrs Diamantea Filia, Head of Sismanoglio CF unit and Mrs Hatziagorou Elpida, Head of Ippokratio CF Unit, described the new data for CF.
Τhe importance of prenatal testing was mentioned by Mrs Diamantea Filia, stating that "in our country there are more than 500,000 carriers of the disease and this shows how important it is for young couples who want to have a child to undergo prenatal testing in time to be aware of their options - if both parents are carriers of a mutation, there is a 25% chance of having a child with the disease".
"There are already more adult patients than pediatric patients (55% adult and 45% pediatric). This percentage is also true for Greece and we know this because for the last three years there has been the National Cystic Fibrosis Registry in our country, a very important project of the Ministry of Health in collaboration with the specialists dealing with the disease. Mathematical models show that in 2040 the ratio of children and adult patients will be 25%-75%, precisely because children who are now early on the new treatments will have a survival rate almost equal to that of healthy people," said Ms. Hatziagorou Elpida, giving an optimistic message for the future of the disease.
Anna Spinou, President of the Hellenic Cystic Fibrosis Association, underlined , at the same time the lung transplant programme in Greece should be improved for patients who are not eligible for the new treatments. “Unfortunately, in the last 12 months we lost 3 cystic fibrosis patients who did not succeed in getting a transplant, but recently the first successful transplants in cystic fibrosis in Greece have started. However, as our country is last in organ donation, we need to increase the number of donors in order to have a sufficient number of transplants."
"Accept their condition and don't hesitate to talk about it", advised 55-year-old Marilena Tsentidou, the first cystic fibrosis patient in Greece who took the big decision to become a mother when there were no advanced treatments, thus becoming the first CF patient in Greece to experience motherhood.
At the same time, the new life she gained through lung transplantation was described by 41-year-old Maria Theodoropoulou, who was transplanted five years ago in Austria as she had reached the final stage of respiratory failure, stating that "I didn't pay attention when other children bullied me as a small child and called me 'the cough' in class. 'The cough' I would say and laugh and move on with my life because we all have one life and we have to live it without fear and with a lot of passion."
You can read the full article in the newspaper TO VIMA at https://www.tovima.gr/printed_post/anasa-zois-gia-tous-astheneis-me-kystiki-inosi/
Special thanks to the journalist Ms. Theodora Tsoli for the excellent article!