ISTANBUL – President of Turkish Hemophilia Association Prof. Dr. Bülent Zülfikar, “Not only blood disease specialists, but also orthopaedists, physiotherapists and nuclear medicine specialists should contribute to the treatment processes and follow-ups of hemophilia patients within the framework of the Hemophilia Council. Hemophilia treatment and follow-up should be done comprehensively.” used expressions.
According to the statement made by Roche Pharmaceuticals Turkey, hemophilia, a genetically transmitted bleeding disorder considered a rare disease, affects approximately 250,000 people worldwide and more than 6,000 people in Turkey.
Although hemophilia is a disease that requires lifelong treatment, it is important to provide accurate information to patients and their families about the management of the disease.
President of Turkish Hemophilia Association Prof. Dr. Bülent Zülfikar said awareness is important in the fight against hemophilia in connection with World Hemophilia Day on April 17.
Zülfikar said they aim to provide society with comprehensive information about living with hemophilia with the “Hemde How” platform, which Roche Pharmaceuticals Turkey has set up in cooperation with the Turkish Association of Hemophilia. hemophilia and the Federation of Hemophilia Associations, and said:
“Work continues worldwide to improve the quality of life of patients with hemophilia. Hemophilia is an inherited bleeding disorder that prevents the normal process of blood clotting. Hemophilia is a rare disease that affects more than 700,000 people worldwide, but only a third of these cases have been recorded. Throughout life, hemophilia, which is a chronic disease, requires a holistic approach. complex and multidisciplinary team.
For this reason, not only blood disease specialists, but also orthopaedists, physiotherapists and nuclear medicine specialists should contribute to the treatment and follow-up processes of hemophilia patients within the framework of the Hemophilia Council. Hemophilia treatment and follow-up should be done holistically.
Emphasizing the importance of being aware of haemophilia and its risks, Zülfikar stressed that the diagnosis of haemophilia is mostly made in the first years after birth, and that it is very important to inform families and to receive professional support during this process.
teacher. Dr. Bülent Zülfikar provided the following information:
“Although hemophilia is not geographically or ethnically different, it can be seen in 1 in 10,000 births. We usually start treatment after the first bleed, before age 3 if possible. Life with hemophilia is not easy considering the risks of the disease, but hemophilia patients from an early age are not easy to live with.From the beginning, families should be aware of these risks, and families should be careful to this regard. For example, the life of a young child may be affected due to his illness while playing with friends or playing sports. Later, he may need to review his profession, hobbies, social life and sexual at every step.
It is very important for patients with hemophilia A to have access to treatment and to apply treatment regularly in order to improve their quality of life. In this context, patients with hemophilia A have access to standard treatments in Turkey, and we continue to work focusing on improving the treatment options offered in this area and reducing the difficulties encountered by patients and their relatives. The “How Both” platform, set up 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. “
“Hamophilias in Life” will soon be implemented
Bülent Zülfikar, who also gave information on the “How” platform, which was set up to increase social awareness of hemophilia, said that April 17 has been celebrated as Hemophilia Day since 1995 in Turkey and since 1989 in the world.
Zülfikar said, “On this special day when we are raising awareness about hemophilia, we are doing valuable work with the ‘Both How’ platform. Our new project “Hemophilia is in Life”, which will inspire all people with hemophilia and help raise awareness in society about the course of the disease, will be implemented soon. With the project, a series of videos will be created in which hemophilia patients will describe their own experiences with their illness, and will be shared on the “How and How” website and social media platforms. While hemophilia will inspire and encourage all patients with their own stories, it will be possible for patients’ loved ones and society to learn about hemophilia up close. The videos in which these treasured stories are told will be available to watch from April 15.” used the expressions. Source: AA