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.
The Theme for World Haemophilia Day 2024
The theme for World Haemophilia Day 2024 is “Equitable access for all: recognizing all bleeding disorders.”
It aims to break down barriers and ensure no one is left behind regarding diagnosis, treatment, and support. This means creating a world where individuals with haemophilia A, B, von Willebrand disease (VWD), or any other inherited bleeding disorder have the resources they need to live healthy and fulfilling lives, regardless of their background.
Importance of World Haemophilia Day
It serves as a global event to educate the public about haemophilia, von Willebrand disease (VWD), and other inherited bleeding disorders. Many people are unaware of these conditions, and increased awareness can lead to earlier diagnosis, better understanding, and reduced stigma.
World Haemophilia Day highlights the ongoing need for research into bleeding disorders. It is also an opportunity to celebrate advancements in diagnosing and treating bleeding disorders. This motivates continued research and inspires hope for a future where these conditions can be effectively managed or even cured.
How You Can Get Involved to Raise Awareness on World Haemophilia Day?
You can contribute to Haemophilia Awareness Day or World Haemophilia Day in many ways. Here’s what you can do:
- Start with educating yourself: Learn more about haemophilia, VWD, and other bleeding disorders. Resources available on the websites of the WFH and national haemophilia organizations provide valuable information.
- Spread awareness: Share information about World Hemophilia Day on social media using relevant hashtags. Organize or participate in awareness campaigns within your community.
- Support organizations: Donate to haemophilia organizations that work tirelessly to improve the lives of individuals with bleeding disorders. Consider volunteering your time or skills to support their initiatives.
Don’t underestimate your efforts. Remember, even your small contribution is a part of the bigger plan to fight against haemophilia and save lives!
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