World Hemophilia Day is a day that is recognized on April 17, every year to create awareness and educate people about the rare bleeding disorder called Haemophilia.
The 2024 theme for the event; “Equitable access for all” is directed towards establishing an approved accessibility to encourage patients with the disease to come out of the shadows and seek medical attention.
Haemophilia is continuous bleeding internally and externally due to the absence of blood clotting proteins.
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 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 Centre For Disease Control (CDC), sees Haemophilia as an incurable and inherited bleeding disorder in which blood cannot clot properly. It also noted that Haemophilia occurs in about 1 of every 5,000 male births.
According to Haemophilia Foundation in Nigeria, the country accounts for 1,000 cases. Researchers also note that people with Haemophilia can experience excess bleeding which can occur after any damage or injury even a slight one.
Its debilitating effects can be very dangerous especially when the bleeding cannot be stopped. Bleeding within joints can lead to chronic joint diseases and excruciating pain. Long-term problems like seizures and paralysis can happen to the victims as well.
Patients are also made to learn how to stop bleeding on their own to avoid fatal incidents from happening such as death, which is also one of the saddening effects of Haemophilia. Bleeding from the brain can lead to instant death if bleeding is not stopped.
Haemophilia just like other diseases, shows signs and symptoms and some of them include;
Bleeding into the joints. This can cause swelling and pain or tightness in the joints; it often affects the knees, elbows, and ankles.
Bleeding into the skin (which is bruising) or muscle and soft tissue causes a build-up of blood in the area (called a hematoma), bleeding of the mouth and gums, and bleeding that is hard to stop after losing a tooth.
Another sign to take note of is bleeding after circumcision (surgery performed on male babies to remove the hood of skin, called the foreskin, covering the head of the penis). Also, bleeding after having shots, such as vaccinations as well as bleeding in the head of an infant after a difficult delivery, blood in the urine or stool as well as frequent and hard-to-stop nosebleeds.
However, due to the incurable nature of the disease, patients are advised to seek the help of a trained medical practitioner where a replacement of missing blood clotting factors can be ensured so that the blood can clot properly by infusing (administering through a vein) commercially prepared factor concentrates.
With the rareness of the disease, the event is observed so that people with Haemophilia can speak up and seek medical attention while medical practitioners are alerted to incorporate Haemophilia management in their health care.
