Hemophilia, as a genetically transmitted bleeding disorder, is considered a rare disease and affects approximately 250 thousand people in the world and more than 6 thousand people in Turkey. Although hemophilia is a disease that requires lifelong treatment, it is important to provide accurate information to patients and their relatives about the management of the disease. Expressing the importance of awareness in the fight against hemophilia on World Hemophilia Day, President of the Hemophilia Society of Turkey Prof. Dr. Bülent Zülfikar states that with “Hem de Nasıl” platform, implemented by Roche Pharmaceuticals Turkey in cooperation with the Hemophilia Society of Turkey and Federation of Hemophilia, they aim to provide comprehensive information about life with hemophilia to society.
Hemophilia A is defined as a genetically inherited bleeding disorder that develops as a result of the absence or low level of clotting factor in the blood. Symptoms of hemophilia include spontaneous bleeding in the joints, prolonged bleeding after an incision or surgical operation. Hemophilia affects 250 thousand people worldwide and more than 6 thousand people in Turkey, and if the treatments are not applied regularly, there may be very serious risks for the patients.
“Treatment and monitoring of hemophilia should be comprehensive”
Pointing out that the efforts to improve the quality of life of hemophilia patients continue globally, Hemophilia Society of Turkey’s President Prof. Dr. Bülent Zülfikar said, “Hemophilia is a genetically inherited bleeding disorder that prevents the normal clotting process of the blood. Hemophilia is a rare disease and affects more than 700,000 people worldwide, but only a third of these cases have been recorded. Hemophilia, a lifelong chronic disease, requires a complicated and multi-disciplinary team approach. Although the most common and problematic bleedings that patients encounter occur in the muscles and joints, the lack of appropriate treatment in this type of bleeding can lead to the development of acute or chronic joint injuries in patients. In this context, not only blood diseases specialists, but also orthopedists, physical therapists and nuclear medicine physicians should contribute in the treatment processes and monitoring of hemophilia patients within the framework of rochthe Hemophilia Council.”
“It is very important to be aware of hemophilia and its risks”
Underlining that the diagnosis of hemophilia is mostly made in the first years after birth, and it is very important for families to be informed and to receive professional support during this process Prof. Dr. Bülent Zülfikar said, “Although hemophilia does not differ geographically and ethnically, it can be seen in 1 out of 10 thousand births. We usually start the treatment of the disease after the first bleeding, if possible before the age of 3 years. Although life with hemophilia is not easy considering the risks brought by the disease, hemophilia patients should be aware of these risks starting from a young age, and their families should be careful at the point of surveillance. For example, the life of a child may be affected by his illness while playing with friends or doing sports. They may need to review their profession, hobbies, social and sexual life in later ages.”
Addressing the accessibility of treatments in Turkey, Zülfikar said, “It is very important for patients with hemophilia A to have access to treatments and to apply treatments regularly in order to improve their life quality. In this context, patients with hemophilia A have access to standard treatments in Turkey, and we continue to work by focusing on improving the treatment options offered in this field and reducing the difficulties faced by patients and their relatives. “Hem de Nasıl” platform, implemented by Roche Pharmaceuticals Turkey in cooperation with the Hemophilia Society of Turkey and Federation of Hemophilia, was created to help patients and their relatives overcome these difficulties.
“Hemophiliacs are in Daily Life”
Commenting on launched to increase social awareness about hemophilia “Hem de Nasıl” platform, Zülfikar said, “April 17 is celebrated as Hemophilia Day in Turkey since 1995 and in the world since 1989. On this special day, we carry out awareness-raising activities on Hemophilia and carry out valuable work with the “Hem de Nasıl” platform. Through the “Hem de Nasıl” platform, our new project called “Hemophiliacs are in Daily Life” will be implemented soon and will inspire all hemophiliacs and help raise awareness of the society about the journey of the disease. With this project, video series will be created in which hemophilia patients describe their own experiences in coping with their disease and will be shared on the “Hem de Nasıl” website and social media platforms. While hemophiliacs inspire and encourage all patients with their own stories; it will be possible for patients’ relatives and society to get to know hemophilia closely. As of April 15, videos of these precious stories can be watched.”
Containing the correct information with the focus on facilitating the lives of hemophiliacs that will contribute to the patients’ life, ‘Hem de Nasıl’ platform can be accessed from the links below:
https://hemdenasil.com/
https://www.instagram.com/hem_de_nasil/
https://www.facebook.com/hemdenasilcom/
