World Haemophilia Day: What It Is and Why It’s Important?

Every year, the 17th of April is marked by the healthcare community as World Haemophilia Day or Haemophilia Awareness Day around the globe. 

In this article, we’ll discuss what this condition is, the significance of this day, and how you can contribute to World Haemophilia Day. 

What’s World Haemophilia (Hemophilia) Day? 

The community that organizes this global event every year on 17th April is the World Federation of Haemophilia (WFH). Celebrating this worldwide event aims to raise awareness about diagnosing and treating haemophilia. This day also highlights the challenges faced by the individuals and families living with this condition. 

Understanding Haemophilia 

Haemophilia is an inherited genetic disorder that affects the body’s ability to form blood clots. This can lead to excessive bleeding after injuries, surgeries, or even spontaneously.

There are 2 main types of haemophilia:

• Haemophilia A: The most common form of haemophilia, also known as classical hemophilia, and is caused by a deficiency in clotting factor VIII. Due to insufficient clotting factor VIII, blood doesn’t clot properly, and bleeding doesn’t stop after an injury or surgery.
• Haemophilia B: It’s the less frequent type of haemophilia and results from a lack of clotting factor IX.

Symptoms of Haemophilia 

Here are some of the symptoms of haemophilia: 

• Excessive bruising 
• Bleeding from mouth and gums 
• Joint pain and swelling 
• Blood in urine or stool 
• Excessive bleeding after injuries or surgery 

Challenges of Living with Haemophilia (Hemophilia) 

Individuals living with haemophilia have to face various challenges in their daily lives. They have a constant threat of bleeding, so they have to limit their physical activity. This affects their participation in sports and recreational activities and can lead to anxiety. 

Sometimes, there is internal bleeding, particularly in joints and can lead to chronic pain and joint damage. Moreover, not all parts of the world offer the best diagnostic procedures and treatments. It also adds to the severity of the condition. Some advanced treatments, such as clotting factor replacement therapies, can improve the hemophilics’ life quality, but these treatments are limited in far-off geographical locations. 

Is Haemophilia Curable? 

Unfortunately, there is no definitive cure for haemophilia yet. It’s a genetic disorder passed down through families, and the underlying genetic cause can’t be reversed directly. 

The research to find a treatment for this disorder is ongoing, so for the individuals suffering currently the focus is on management, not cure. To manage haemophilia, here are some things that are being done: 

• Clotting factor replacement therapy: This involves injecting missing clotting factors (like factor VIII or IX) into the bloodstream to help the blood clot properly.
• Medications: Certain medications can help regulate blood clotting or minimize joint damage caused by repeated bleeding.
• Physical therapy: Strengthening muscles and maintaining joint health can reduce the risk of injury and bleeding.

Researchers are actively exploring potential cures for haemophilia. Some promising areas include:

• Gene therapy: This involves introducing healthy copies of the missing clotting factor gene into a patient’s cells, potentially allowing them to produce the factor on their own.
• Gene editing: This technology holds the potential to correct the mutation in the clotting factor gene itself, offering a more permanent solution.

While current treatments effectively manage haemophilia, a cure would be a game-changer. It would eliminate the need for regular injections, reduce the risk of complications, and significantly improve the quality of life for people with haemophilia.