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At What Stage Is the Care of Children with Cystic Fibrosis in Our Country

The first of its kind workshop on the rare disease cystic fibrosis was held on 12 and 13 March, at St. Marina University Hospital in Varna. The meeting was attended by doctors from the UK, working with cystic fibrosis patients, doctors of the Second Pediatric Clinic at Varna University Hospital, representatives of the patient organization and the Association of Rare Diseases in Varna, representatives of NGO "Delfinite" ("The Dolphins"), parents, postgraduate and undergraduate students. The implementation of this meeting was made possible thanks to NGO Child Health International, which supports the cooperation between doctors in the UK and various other countries such as Russia, India, Poland, Romania. It has been in partnership relations with Bulgaria for 2 years.

The British specialists examined and consulted children and adults with the rare disease. The leading doctors from Great Britain discussed the optimization of antibiotic therapy for respiratory infections, nutrition and physiotherapy of patients with the specialists from St. Marina University Hospital.

The interdisciplinary meeting, which was attended by pediatricians, laboratory physicians, physiotherapists, pulmonologists and gastroenterologists, and the dietitian of the University Hospital in Varna, aimed to illuminate the problem from different perspectives. The parents of sick children watched how the doctors in Varna worked.

"56 children have been monitored and treated here. For comparison: about 40 children are being monitored in Plovdiv, 40 in Pleven and about 100 children in Sofia. Practically, Varna turns out to be the second centre. We have patients from the whole Eastern part of Bulgaria, patients from the other centres in the country also come here for consultations," pointed out Assoc. Prof. Dr. Miglena Georgieva, head of the Second Pediatric Clinic at St. Marina University Hospital - Varna.

The representatives of NGO "Delfinite", who for several years have been working hard to raise funds to support people with cystic fibrosis, announced that with the help of children from the senior classes of the schools, they had raised about 10,000 lev. A second spirometer for the Room for Cystic Fibrosis at St. Marina University Hospital is to be purchased with the money raised and food supplements for enteral nutrition for the sick children, at the amount of approximately 4000 lev.

Pulmonologists and gastroenterologists are working side by side at the Second Pediatric Clinic at St. Marina University Hospital-Varna due to the fact that the disease is genetic, and it affects mainly the pulmonary system, but at the same time it very often affects the digestive tract, which is connected to the respiratory system.

"The conclusions we can draw from this highly productive meeting are aimed at the way of working. It is important to define exactly what we want to do and what we are missing. We need a national register, we need neonatal screening, some drugs are not imported in Bulgaria and we need a legal operational centre, such as the centres in Europe. We have taken steps towards this, but perhaps we will be the pioneers in the country. We would like to preserve the relationships with this unit in the UK in order to conduct on-line collaboration and teleconsultation through which we might get second and third opinion for patients in severe conditions. We can discuss adjustments of antibiotic therapy, nutritional status and physiotherapy with our colleagues from Great Britain. We would like to exchange specialists between the two countries. We would like to have access to literature for patients and to the latest research for us, as physicians," said Assoc. Prof. Georgieva after the meeting.