HELP TO STOP THE BLEEDING
World Hemophilia Day – 17 April
Doha, 18 April, 2022: A new international guidance developed by WFH released in 2020 has highlighted the importance prophylactic or preventative therapy for hemophiliac patients.
World Hemophilia Day, recognized on 17 April, provides an opportunity to educate the public and patients about the condition, which he says is an important part of building community support for individuals living with bleeding disorders. The theme for 2022 is Access for All.
Dr. Ahmed Abdulaziz Abdelbari, Clinical Pharmacist at Hamad General Hospital, said the
prophylactic treatment for hemophilia patients can help in stemming annual bleeding rate and joint and muscle damage which will improve their quality of life and help them to be integrated in the society .
“Hemophilia patients have a fault in a gene that regulates the body’s production of proteins called clotting factors. This can cause spontaneous bleeding as well as severe bleeding following injury or surgery. The most common type of hemophilia is called hemophilia A and is a result of insufficient clotting factor VIII (factor eight). A less common type is hemophilia B, which is the result of an individual not having enough clotting factor IX (factor nine),” said Dr. Abdelbari.
Hemophilia is rare, with type A affecting around 1 in 10,000 people and type B affecting approximately 1 in 50,000 people globally. The severity of the condition depends on the amount of factor VIII or factor IX in the blood, and the disease is classified as mild, moderate, or severe. People with severe hemophilia usually experience spontaneous frequent bleeds into their muscles or joints, whereas those with mild hemophilia generally experience bleeds only as a result of surgery or major injury.
“For the most part, hemophilia is a life-long condition that an individual is born with and regardless of the type, the result is the same in that the individual bleeds for a longer time than normal. New long-acting factor replacement therapies are revolutionizing hemophilia care by providing on-demand or rescue treatments. When taken at the first sign of injury, these therapies can help stop excessive bleeding,” said Dr. Abdelbari.
Dr. Abdelbari said that in very rare cases, a person can develop hemophilia later in life. He said the majority of these cases involve middle-aged or elderly people or young women who have recently given birth or are in the later stages of pregnancy. Known as acquired hemophilia, the condition usually resolves with appropriate treatment.
Around 75 patients with hemophilia and rare bleeding disorders are currently receiving follow-up care at HMC. Dr. Abdelbari says for patients with hemophilia, ongoing monitoring and treatment are key to preventing excessive bleeding and complications. He notes there is no cure for the condition but says with proper management, individuals with hemophilia can enjoy a good quality of life.
Since the gene for hemophilia is carried on the X chromosome, it is almost entirely a male disease. However, women can pass the gene to their offspring and Dr. Abdelbari says this underscores the importance of both increasing public awareness about the condition and the need for pre-marital screening.
“We encourage all women who have experienced symptoms of a bleeding disorder to get screened for hemophilia. Common symptoms of a bleeding disorder include frequent nose and gum bleeds, unexplained and uncontrolled bleeding, including muscle bleeds, and bruising. Women with hemophilia are particularly at risk of excessive postpartum bleeding following childbirth and can experience prolonged or heavy menstrual bleeding. It is important for women who carry the hemophilia gene to be aware of their status,” said Dr. Abdelbari.
A blood test can determine the presence of hemophilia, and more specifically whether it is type A or type B and it is advisable for women to know their carrier status before becoming pregnant.
Qatar Friends of Hemophilia group and the National Center for Cancer Care and Research (NCCCR0 celebrated World Hemophilia Day this by holding a scientific meeting with healthcare professionals , patients from Hamad General Hospital , NCCCR ,Sidra Medicine to promote awareness.