CFW UPDATE

CFW Sponsors Nutrition & Physiotherapy Workshop in Eastern Europe

Cystic Fibrosis Worldwide held a workshop at the new Georgian CF Center in Tbilisi from November 13-15 to train parents and patients on proper nutrition and physiotherapy. This was the first CF workshop held in the former Soviet Republic, and it offered a support system and health information to over thirty patients and their parents. Dr. Gabriela Sabolova from Slovakia and Hugh Gauchez, a French physiotherapist, led the workshop.

Kakha Keladze, Head of Department of Medical Standards and Norms, Ministry of Labour, Health and Social Affairs, attended the workshop and informed parents that CF will be included in the National Health Care Plan for children with chronic illnesses beginning January 2007. Many parents shed tears of happiness at this impressive step forward in Georgian healthcare, because it means that patients up to 15 years of age will receive free care – including free Creon enzymes and antibiotics.

Dr. Sabolovo taught patients and parents about proper CF nutrition like how to add fat and calories to the diet to increase body weight and how to use Creon enzymes after meals and snacks. Dr. Sabolova received a grant from CFW in 2004 to study nutritional care for cystic fibrosis patients at the Cystic Fibrosis Centre in The Queen Silvia Children’s Hospital in Gotenborg, Sweden. Parents were encouraged to keep a daily food log to understand their child’s eating patterns and show parents where calories can be added to the diet.

Dr. Sabolovo focused specifically on fat and high calorie foods that are available in Georgia, which was helpful. Parents were encouraged to exchange recipes to aid each other in increasing the nutritional and caloric value of the local foods. Parents were also aided by a booklet on proper CF Nutrition CFW had translated into Russian. The booklet provided essential nutritional information and included a body weight chart. Katarina Stepankova, a CFW Board Member and mother to two sons with CF, collected Creon, vitamins and medications in Slovakia and provided patients with samples.

Hugh Gauchez taught groups of parents and patients physiotherapy techniques. Parents, most of whom had never performed physiotherapy, were extremely enthusiastic to learn these life saving techniques. Parents also learned how to easily incorporate these methods into their children’s. Patients learned how to use the flutter and received a free flutter air clearance device. Each participant learned how to take breathing treatments and will recieve a free nebulizer to use for their breathing treatment. Hugh Gauchez is a member of International Physiotherapy Group for CF and the French Physiotherapy Association. He previously ran physiotherapy classes for parents and patients with Katarina Stepankova in Slovakia.

Christine Noke encouraged parents to lobby the Georgian Government for better care for CF patients over the age of 15. She suggested parents hold monthly meetings to network and to learn about healthcare practices followed in other countries. Doctors from Georgia and Armenia who attended the workshop plan to incorporate these methods in their CF treatment plans.

An evaluation questionnaire was handed out to parents consisting of 5 basic questions. Here are some of the replies:

• “This workshop has given me hope that my child will have a better life. I did not think anyone was concerned with the needs of my family but now I see so much help coming from CFW. I know I will be better able to care for my child and am so thankful to have this chance to learn more about CF care.”

• “It is very bad for families who have children with CF in Georgia. We are a poor country and have no money for expensive Creon and other medications. Our Dr.s do not understand this disease and never taught me about physiotherapy or nutritional needs of my son. I am so thankful for CFW and what they are doing for me and my son. I will be forever grateful for my sons free flutter, nebulizer and for the education we received.”

• “The people who come to Georgia from CFW will never understand how much hope they have given to me and my family. We have two children with CF and we feel we are very alone with our many problems. Today we learned of the many patients around the world suffer from this disease and we know that one day soon care in Georgia will be better for our children. Thank you for all that you do for CF patients in the world.”

The workshop was very successful. Doctors, patients and parents all received valuable information on proper CF care. Participants learned valuable techniques to implement in their own environment to improve the health care of CF patients in the region. CFW hopes to continue to provide guidance and support to developing countries around the world.

 

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