prof. Dr. Bülent Zülfikar: Raising awareness in hemophilia is very important for combating the disease

Hemophilia, which is considered a rare disease and is a genetically inherited bleeding disorder, 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. Emphasizing the importance of awareness in the fight against hemophilia on World Hemophilia Day, Turkish Hemophilia Association President Prof. Dr. Bülent Zülfikar, Roche Pharmaceuticals Turkey’s Turkish Hemophilia Association and Hemophilia He states that they aim to provide the society with comprehensive information about life with hemophilia, with the ‘Both How’ platform, which was implemented in cooperation with the Federation of Turkish Associations.

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. In hemophilia, which affects 250 thousand people worldwide and more than 6 thousand people in Turkey, there may be serious risks waiting for the patients if the treatments are not applied regularly.

What is hemophilia? Why does it happen? Symptoms and treatment

Treatment and follow-up of hemophilia should be comprehensive.

Pointing out that efforts to improve the quality of life of hemophilia patients continue globally, Prof. Dr. Bülent Zülfikar, “Hamophilia 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. For this reason, not only blood diseases specialists, but also orthopedists, physical therapists and nuclear medicine specialists should contribute in the treatment processes and follow-ups of hemophilia patients within the framework of the 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, it is very important to inform families and receive professional support during this process. Dr. Bülent Zülfikar said, “Hamophilia can be seen in 1 out of 10 thousand births, although it does not differ geographically and ethnically. 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; Families also need to be careful at the point of surveillance in this regard. For example; The life of a young child can be affected by his illness while playing with friends or playing sports. He may need to review his profession, hobbies, social and sexual life at every step in his later years.

Answers to all your important questions about hemophilia

Addressing the accessibility of treatments in Turkey, Prof. Dr. Zülfikar said, “It is very important for patients with hemophilia A to have access to treatments and to apply treatments regularly so that they can improve their quality of life. In this context, it is possible for patients with hemophilia A to access standard treatments in Turkey, and we aim to develop the treatment options offered in this field; We continue to work by focusing on reducing the difficulties faced by patients and their relatives. The “Both How” platform, implemented by Roche Pharmaceuticals Turkey in cooperation with the Turkish Hemophilia Association and the Federation of Hemophilia Associations, was created to help patients and their relatives overcome these difficulties.” uses expressions.

Hemophilias in Life

Commenting on the “Hemde How” platform, which was implemented to increase social awareness about hemophilia, Prof. Dr. Bülent Zülfikar said, “April 17 has been celebrated as Hemophilia Day since 1995 in Turkey and since 1989 in the world. On this special day, where we carry out awareness-raising activities on hemophilia, we carry out valuable works with the “Both How” platform. Our new project, “Hemophiles in Life”, which will inspire all hemophiliacs and help raise awareness of the society about the journey of the disease through the “Both How” platform, will soon come to life.

With this project, video series will be created in which hemophilia patients describe their own experiences in coping with their disease, and they will be shared on the “How and How” 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. The videos in which these valuable stories are told will be available to watch as of April 15.”

Focusing on facilitating the lives of hemophiliacs, the ‘Hemde How’ platform, which contains the correct information that will contribute to the patients’ life as they wish, can be accessed from the links below:
https://hemdenasil.com/
https://www.instagram.com/hem_de_nasil/
https://www.facebook.com/hemdenasilcom/

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