CFW Update:

Project Georgia Evaluation
Maartje Schaap, Capacity Building Project

I have been working with CFW since June to evaluate the process and the outcomes of the CF project in Georgia. My main objective as a Ph.D. student from the University of Maastricht is to develop a health-care infrastructure for the management of CF in the Republic of Georgia. In addition, I plan to disseminate the development plan to be used in other developing countries while also providing a plan for use in the treatment of other inherited chronic diseases.

To gain a better understanding of the situation faced by CF patients and their families in Georgia, I visited Tbilisi, the capital of Georgia. This gave me the chance to speak with patients and their families. In this article I will try to give an impression of the needs of the families by quoting some parents and patients.

There are not many CF patients diagnosed in Georgia, though the incidence is estimated to be around 1 in 3000 newborns. Due to the lack of proper diagnosis methods and knowledge of the symptoms of CF; CF is under diagnosed in Georgia

Lia: ‘Natsa was 8 months old when she became very ill. The doctors suspected tuberculosis but the treatment for tuberculosis made her condition worse. I convinced the doctors to do a sweat test. Cystic Fibrosis was diagnosed at 18 months.’

The prophylactic treatment prescribed in the western world is not available to patients in Georgia. There is little knowledge of CF among the doctors and most medicines are either very expensive or not available at all.

Lia: ‘I got a box full of expired Creon from a German doctor I know. I gave Natsa double doses because it is expired. When the box is empty, I don’t know how to give Natsa the prescribed amount of Creon. It is very expensive.’

Father of Georg: ‘When diagnosis was made, they didn’t tell me about the necessity of pancreatic enzymes.’

Mother of Maria: ‘We cannot afford the amount of pancreatic enzymes Maria need so we give her half the doses.’

Nino: ‘The doctors told me that physiotherapy was important. But they didn’t show me how to do it.’

Father of Georg: ‘We used to do some physiotherapy with Georg, but when his condition improved, we stopped.’

Leila: ‘After the diagnosis was made, the doctors told us that CF was a severe disease and that systematic treatment was needed. Creon was prescribed. Nothing was told about physiotherapy, diet or the use of antibiotics.’

Because of the lack of knowledge among the medical staff, the patients and their families do not get enough information about the disease, the treatment and the prognoses. Sometime they feel very lonely, alone with a lot of unanswered questions.

Lika: ‘I like running around with my friends. But my mother won’t let me all the time. She says it is not good for me, because I start coughing a lot.’

Nino: ‘The grandparents of Lika don’t want to know that Lika has a genetic disease. They say: Our family is strong and healthy, we cannot be the carriers of such a disease.’

Leila: ‘I find it hard to tell people about CF. They don’t understand genetics. I would like to meet other parents of patients with CF, so I can talk with people who understand the situation I am in.’

Father of Georg: ‘Will Georg be able to function as a good and healthy man? Will he be able to have children?’

Parents of Maria: ‘Will Maria be able to give birth to a healthy baby?’

Mother of Maria: ‘When I get pregnant again, is there something I can do to prevent the baby from having CF?’

Leila: ‘Is there really no cure for CF?’