Who we are
hemophilia
Hemophilia is a rare, genetic disorder that impairs the blood’s ability to clot, leading to prolonged bleeding after injury or surgery. It can also result in spontaneous bleeding into joints, muscles, and organs, which, without proper treatment, can lead to pain, damage, and significant health complications.
There are two primary types of hemophilia, categorized based on the deficient clotting factor:
- Hemophilia A (Classical Hemophilia): This is the most common type and is due to a deficiency in clotting Factor VIII.
- Hemophilia B (Christmas Disease): This type is caused by a deficiency in clotting Factor IX.
Both types of hemophilia are typically inherited, passed down from parents to children through genes. However, about 30% of cases arise from a spontaneous mutation of the gene responsible for producing the clotting factor, with no family history of the disorder.
Symptoms of hemophilia can vary widely depending on the severity of the clotting factor deficiency. Common signs include:
- Excessive bleeding from cuts or injuries
- Frequent nosebleeds
- Prolonged bleeding after dental work or surgery
- Easy bruising
- Joint pain and swelling due to bleeding in the joints
Treatment for hemophilia focuses on replacing the missing clotting factor through infusions of factor concentrates. These can be derived from donated human blood or produced synthetically (recombinant). Prophylactic (preventive) treatment schedules may also be recommended to reduce the frequency of bleeding episodes and prevent joint damage.
Advancements in medical research have significantly improved the quality of life for individuals with hemophilia. Gene therapy, which aims to introduce a functional copy of the missing or defective gene into a patient’s body, is an area of active research and holds promise for a long-term cure.
Despite these advancements, living with hemophilia requires careful management to prevent bleeding episodes and protect joint health. Education and support for individuals and families affected by hemophilia are crucial components of care, emphasizing the importance of regular treatment, physical therapy, and a supportive community network.
About HSB
The Hemophilia Society of Bangladesh (HSB) is a voluntary organization dedicated to supporting individuals with hemophilia and other bleeding disorders in Bangladesh. Here are some key details about HSB:
Formation and History:
- HSB was established on March 18, 1994, during a meeting held at the National Shaheed Minar in Dhaka. The founding members included hemophiliacs and their family members.
- The first president of the society was Mr. Muhammad Habibullah, who himself was a hemophiliac.
Mission and Objectives:
- The primary aim of HSB is to provide assistance and support to individuals affected by hemophilia and other bleeding disorders in Bangladesh.
- HSB is registered as a charity organization with the Department of Social Welfare (Registration No. DHA-03359).
- It holds the status of being the National Member Organization (NMO) of the World Federation of Hemophilia (WFH).