World Hemophilia Day is held annually on April 17 by the World Federation of Hemophilia(WFH). It is an awareness day for hemophilia and other bleeding disorders, which also serves to raise funds and attract volunteers for the World Federation of Hemophilia. It was started in 1989, April 17 was chosen in honor of Frank Schnabel’s birthday.
The World Federation of Hemophilia(WFH) was established in 1963 by Frank Schnabel, a Montreal Businessman born with severe hemophilia A. His vision, as he stated, was to improve treatment and care for the “hundreds of thousands of hemophiliacs” worldwide through a new international organization. It educates hemophiliacs and lobbies for improved medical treatment. 75% of people in the world with bleeding disorders do not know it and do not receive care.
WHAT IS HEMOPHILIA?
Hemophilia is usually an inherited bleeding disorder in which the blood does not clot properly. This can lead to spontaneous bleeding as well as bleeding following injuries or surgery. Blood contains many proteins called clotting factors that can help to stop bleeding. The severity of hemophilia that a person has is determined by the amount of factor in the blood. The lower the amount of the factor, the more likely it is that bleeding will occur which can lead to serious health problems. In rare cases, a person can develop hemophilia later in life. The majority of cases involve middle-aged or elderly people or young women who have recently given birth or are in the later stages of their pregnancy.
CAUSES OF HEMOPHILIA:-
Hemophilia is caused by a mutation or change, in one of the genes, that provides instructions for making the clotting factor proteins needed to form a blood clot. This change or mutation can prevent the clotting protein from working properly or to be missing altogether. These genes are located on the X chromosome. Males have one X and one Y chromosome(XY) and females have two X chromosomes(XX). Males inherit the X chromosome from their mothers and the Y chromosome from their fathers. Females inherit one X chromosome from each parent. The X chromosome contains many genes that are not present on the Y chromosome. Thus, males can have a disease like hemophilia if they inherit an affected X chromosome that has a mutation in either the factor VIII or factor IX gene.
TYPES OF HEMOPHILIA:-
There are several different types of hemophilia. The following two are the most common:-
- Hemophilia A(classic Hemophilia)- this type is caused by a lack or decrease of clotting factor VIII.
- Hemophilia B(Christmas disease)- this type is caused by a lack or decrease of clotting factor IX.
SIGNS AND SYMPTOMS:-
- bleeding within joints that can lead to chronic joint disease and pain.
- bleeding in the head and sometimes in the brain which can cause long term problems, such as seizures and paralysis.
- death can occur if the bleeding cannot be stopped or if it occurs in a vital organ such as the brain.
- bleeding into the skin(which is bruising) or muscle and soft tissue causing a build-up of blood in the area(called a hematoma).
- bleeding of mouth and gums.
- bleeding after having shots, such as vaccinations.
- blood in urine or stool.
- frequent and hard-to-stop nosebleeds.