Teachers in Istanbul are familiar with rare and chronic diseases.

For a disease to be considered rare, 1 person in 2,000 must be affected. There are more than 6,000 rare diseases detected worldwide. 70% of these diseases are seen in children.

Life is much more difficult for those children than for their healthy peers. Perhaps most, they have difficulties in their education life. Because it is not easy to ensure that the treatment and education processes of sick children who go to school continue in a harmonious manner. The main actor who will facilitate, motivate and support the education of sick children is undoubtedly the teachers.

Based on this fact, Istanbul Provincial Directorate of National Education has put its signature under an exemplary study. Within the scope of the ‘Delicate Children Project’ launched in 2022, a research was conducted with the participation of 5 thousand teachers. The result of this research revealed that teachers need information about children with chronic and rare diseases. With the research, the sensitivities and concerns of the educators were discussed. Determining the needs of children during natural disasters was also added to the study.

A commission consisting of experts in their fields such as physicians, academicians, and association representatives was established. As a result of the work of the commission, a training program was prepared to bring together teachers and families of children with rare/chronic diseases. The aim was to provide academic information about the right approach and limits of responsibility to children diagnosed with rare/chronic diseases, to facilitate their access to their basic and special needs, and to provide benefits for the continuity of their education life in harmony.

As TRT Haber, we participated in the first training program held in Üsküdar Adile Sultan Summer Palace. We talked to the families of children with rare/chronic diseases, volunteer teachers involved in the project, and physicians about the details of the project.

“We aim to show teachers the way to be followed”

Istanbul Provincial Directorate of National Education Special Education and Guidance Services Education Branch Manager Gülşen Özer draws attention to the fact that teachers cannot master the characteristics of every rare disease. He says that they planned the education program because they saw that their education about diseases would also affect their approach to their students.

“First of all, we organized a meeting with our teachers from all our districts. Representatives from foundations and associations working effectively on diseases came, as well as families and students who experienced this disease. Many experts came. When this training is over, we want; Our teachers should also explain this issue to other teachers in their districts. What we aim for is: If there is a child with a rare disease in the classroom, we want to show him what to do for him and how to find those paths.”

“It is very valuable for teachers to communicate with children with rare diseases”

Deniz Atakay, who became a mother in 2001, met with rare diseases at the birth of her daughter. As a result of the newborn screening test, she learned that her baby had phenylketonuria (PKU). He tells that his whole life has changed with this disease, which he has never heard of before:

“This is a disease that affects the intelligence, my daughter was at risk of being mentally retarded. He has to live with low protein special products and fruit and vegetables in moderation throughout his life. It’s a very difficult feeling. While you feel very happy and very important from the moment you become a mother, it is devastating for you to be told about your baby’s diseases. It’s a very long road for us. First, you need to know, understand, understand and explain the disease to your baby, your partner, your family and your environment.”

Atakay learned every detail of the disease and shaped her daughter’s life accordingly, with the guidance of physicians. He also extended a hand to families who shared the same fate as him on this difficult road. He is currently the President of the Phenylketonuria (PKU) Family Association and also the Founding Director of the Rare Diseases Network. She believes that with the Delicate Children Project, teachers can provide opportunities for turning points in children’s lives.

“Some of our children go to school with special meals, they go to school with oxygen concentrators, which can be very large appliances. Some of our children have to drink 130 pills a day. Some of our children have to go to the toilet a lot. It is very valuable for children that teachers can communicate with them openly and provide that opportunity.”

“The parent of the child with a rare disease should convey all the information to the teacher”

The daughter of Turkish Language and Literature teacher Orhan Çağrı Sarıhan also suffers from PKU. She attended education as an educator and father of a child with a rare disease. “My daughter will continue her life by following a heavy diet for the rest of her life,” she says. She says that children with rare diseases are often stronger and more mature than their healthy peers because of their living conditions. He describes the disadvantages they experience in their education life as follows:

“These children involuntarily do not get the necessary energy from what they eat. As such, they may experience problems in studying, concentrating and focusing. Their attendance may not be as long as other students. The teacher’s function comes into play at the point where he feels that his student has a special situation, that he needs a little more help or reinforcement.”

Underlining an important issue, Sarıhan says, “Student parents should share clear information about their child’s situation with the educational institution.” He concludes his words by saying, “When this connection is established firmly and communication is established between the parents and teachers, the success of that student will develop and increase in direct proportion.”

“Being conscious, being aware prevents people from being afraid”

Çiğdem Özavcı is one of the volunteer teachers involved in the Delicate Children Project. Supporting what Orhan Çağrı Sarıhan said, he also emphasizes the importance of informing teachers about children’s diseases by families.

“What does that disease bring to the child? If the parent does not tell this, the teacher may not know. Parents need to be aware of this and share their child’s situation with their teacher. Not knowing is the biggest issue here. Is there any medication that needs to be taken continuously? Got a diet to go on? How does he feel at home because of his illness, how does he express himself? The teacher will know these things so that he can take precautions accordingly in the classroom.”

Özavcı says that the training given to teachers is an important gain as it will increase awareness. Saying, “It is not possible for every teacher to know what the consequences of every rare disease are,” he explains the contribution of raising awareness with these words:

“Being conscious, being aware, prevents one from being afraid. Man avoids what he does not know, he is afraid. If he does, he knows how to help. That’s why raising awareness is so important.”

“Treatment is not the only problem of children with the disease”

Another name participating in the trainings is Pediatric Hematology and Oncology Specialist Prof. Dr. Bronze Fisgin. “The only problem of children with chronic and rare diseases is not to provide treatment services,” says Fışgın, adding:

“They need to grow up healthy and mentally prepare for adulthood. This leads to the necessity of conducting education life in parallel with this. This project already serves that.

While the treatment processes related to the disease continue with the project, we pursued how we can bring these children to adulthood in a healthy way by bringing together the hospital and school and how we can provide them with more gains.”