Gelisim News

One of the rare diseases, phenylketonuria (PKU), which limits one's protein breakdown and can cause serious brain damage, affects 1 in 10,000 people in Europe. While there are over 20 thousand individuals with PKU in Turkey, approximately 300 children with PKU are born each year in the country.

Lect. Mehmet Başcıllar from the Department of Social Service at Istanbul Gelisim University and his student Yasemin Aydoğan conducted a 5-month study to identify the problems and needs of children with PKU. According to the study conducted with 89 parents, the biggest problem of patients with PKU was that special food is not affordable. It was determined that the expenditure of the participants on special foods was 500 Turkish Liras per month.

Yasemin Aydoğan, one of the conducters of the study and giving information about the disease, said: “Children diagnosed with PKU cannot consume high protein foods such as meat and meat products, milk and dairy products, egg, biscuits and cakes. Children need to live a life appropriate to their special diet. If not, the disease causes mental retardation and nervous system problems. PKU can be diagnosed with a drop of blood from the heel. It is estimated that over 20 thousand people in Turkey have been diagnosed with PKU. Each year, about 300 children with PKU are born in Turkey. The reason for this ratio to be high compared to other countries in the world in Turkey, it stems from the prevalence of kin marriages in Turkey.”

Lecturer Mehmet Başcıllar explained the other results of the research. According to this, 3 out of 5 parents complain about not selling food suitable for PKU disease in the school canteen. In the study, 3 out of 5 parents stated that this disease negatively affected their children's mental health, and almost 1 out of every 2 people reported that eating different foods from other students during the lunck break make them feel sad. In addition, 4 out of 5 participants stated that the society do not know about PKU disease.

Emphasizing that the disease is not known by the society deeply affects the social life of individuals with PKU, Mehmet Başcıllar suggested: “Although special foods are manufactured in Turkey, we import raw materials and it increases the price continuously due to the exchange rate and they are over the market prices. The related ministers should support the projects to ensure the production of the raw materials for the special foods in Turkey and announce the stimulus package in order to prevent this increase. In this way, not only the food prices will fall below the desired level and there will be no need for financial assistance to the families of children diagnosed with PKU.”

Mehmet Başcıllar continued his suggestions as follows:

“Also, we see that children cannot access the appropriate foods in the school canteen. The Ministry of National Education should particularly supervise school canteens, take measures and make arrangements on this issue. Psycho-social support needs to be provided to children and their caregivers by relevant professionals, particularly social workers. Children spend most of their time at school just after home. For this reason, we understand the importance of social service at school and the emergence of the implementation of social service at school. There is a need to be informed the society by the related public institutions and organizations especially professionals on public health through public service ad. Otherwise, children may be exposed to negative behavior.”

Underlining the need to create a customized diet, Lect. Azize Nur Yıldırım from the Department of Nutrition And Dietetics at Istanbul Gelisim University said: “Phenylketonuria is a disease diagnosed with blood taken from the heel after childbirth. Therefore, it is absolutely necessary to plan the amino acid we call phenylalanine, which individuals can tolerate. The remaining protein needs to be complemented with protein mixtures. Because almost all foods contain high or normal amounts of phenylalanine. We have to give these people phenylalanine through restricted diets. Otherwise, intelligence and developmental retardation are inevitable. The level of phenylalanine that can be tolerated is calculated by dietitians according to the customized phenylketonuria rate. Nutritional level is planned according to the highest level of phenylalanine from these foods. For example, one gram of protein contains about 50 milligrams of phenylalanine. We even give breast milk by calculating this amount.”