CF children chance

Question

Hello,
Dear doctors , with respect for your work, I want to ask why our country can not follow the ''developed'' treatment scheme on CF? Our children prognosis is painful for us , while abroad patients live 40 - 50 years a relatively normal life? Why doctors from other cities treat disease with trienzime instead of kreon? Because of unjustified pride, children are treated superficially, not to discuss physiotherapy, eg. of respiration, the spittle.
My niece (5.7 months) has piocianic and treated with antibiotics . Her disease get worse and we managed to get appointment to a clinic in Verona. The doctors from there were stunned by the treatement received by our child .I ask you to spread in country your knowledge, performance and education, in order that all physicians to be aware !

Answer

Dear Madam, what we can say is that we have currently accepted treatment protocols at the national level. Also there is a national network of cystic fibrosis centers, which includes a national center in Timisoara and six regional centers: Bucharest (IOMC "Alfred Rusescu" Hospital and "Marie Curie"), Iasi, Cluj, Brasov, Craiova, Constanta.
In the work against cystic fibrosis are involved non-gouvernmental associations: Romanian CF Association (national association , established in 1990 by Prof. Dr. Ioan Popa, which is the president- who represent Romania in CFW and CFE)-contact: Romanian CF Association (Asociatia Romana de Mucoviscidoza) , Timisoara , Evlia Celebi street, 1-3, Tel/fax: 0040256 494529 , 0040256491742, Email: ioanpopa38@yahoo.com, liviupop63@yahoo.com, web: www.armv.ro, and CF Association from Romania (georgiananitu@rdslink.ro or fibrozachistica@yahoo.com; Tel +40 (721) 096 087).
National CF Centre, under aegis of Romanian CF Association has organised courses on Cystic Fibrosis in various romanian cities, every year; the most important manifestation organised in Romania were: "Physiotherapy in Cystic Fibrosis course for East-European Countries", September 1996, under aegis of ICF(M)A , the biggest participation at that date, the "First National Cystic Fibrosis Romanian Congress with International Participation", May 2003, with excellent participation for medical and lay people also.
CF Europe, the European patient association, together with the Romanian patient association, is preparing conferences in Romania in 2010 and 2011 where doctors and everyone who works with CF and families and can get access to information about the latest CF therapies and care. The Romanian CF association is also working very actively for better access to care and has had very promising contacts in order to obtain Kreon in Romania.
For more information and to help further progress you can contact your national CF association (see above).

ECORN-CF has the aim of making European standard of care accessible to all patients from the participating countries. So whenever you have a question about best possible treatment options or European standards of care you are of course welcome to ask for our opinion and show the answer to the doctors caring for your niece. That may help.
Regards,
Dr. Liviu Pop

10.08.2009