World Hemophilia Day 2020: Importance, theme and significance

World Hemophilia Day is celebrated every year on 17^th April with the goal of raising awareness about hemophilia and other bleeding disorders in order to ensure early diagnosis and quicker access to treatments. By educating people about hemophilia, this awareness campaign empowers people with this condition to live a longer and healthier life. World Hemophilia Day will celebrate its 30th anniversary this year. An initiative by the World Federation of Hemophilia (WFH), headquartered in Monteal, Canada, this day was first celebrated in 1989 on 17th April, the birthday of Frank Schnabel, the founder of the organisation. Currently, 113 countries are a part of WFH, presided over by Alain Weill.

World Hemophilia Day, like most other observance days, centres around a new theme every year. This year, the theme is: Get+involved. This theme aims to fulfil WFH’s mission of ‘Treatment for All’ at the global and community level. This is also a call to action for everyone to contribute to spreading awareness about bleeding disorders.

Themes of the yesteryears

Here is a flashback of the themes of World Hemophilia Day from 2007. A look at them will tell you how this initiative has progressed over the years.

2019: Outreach and Identification

2018: Sharing Knowledge Makes Us Stronger

2017: Hear Their Voices

2016: Treatment for All, The Vision of All

2015: Building a Family of Support

2014: Speak out: Create Change

2013: 50 Years of Advancing Treatment for All

2012: Close the Gap!

2011: The Many Faces of Bleeding Disorders: United to Achieve Treatment for All

2010: The Many Faces of Bleeding Disorders United to Achieve Treatment for All

2009: Together, We Care

2008: Count Me In

2007: Improve Your Life!

Why is it Important to observe World Hemophilia Day?

According to WFH, more than 315,000 people across 116 countries were reported to be suffering from hemophilia in 2017. Despite being a rare disease, hemophilia is claiming a lot of lives worldwide. Lack of awareness about this rare yet fatal condition is leading to delayed diagnosis which, in turn, is increasing the death toll. That is why it is important to inform people about hemophilia. This is the task that WHF aims to accomplish every year on World Hemophilia Day. Spreading word about bleeding disorders and their treatment options can save many lives and prevent the birth of hemophilic babies. If you are hemophilic or your partner is a carrier, consult a genetic counsellor before planning a baby. This will help you make the right decision.

How is this day celebrated?

People all around the globe celebrate this day by organizing conferences, workshops, and events to spread awareness about hemophilia and its treatment modalities. Also, celebration activities include lighting up the global landmarks in red. Last year, Qutab Minar was lit up in red on World Hemophilia Day. In fact, people from the bleeding disorder community also switch on red lights in their homes as a mark of observance of this day. If you want to be a part of the hemophilia campaign this year, you can use social media to send out your message about the condition. Starting from taking a selfie in red and uploading it on your social media handles, posting a status or video, there are various light activities through which it can be. You can also share tweets related to this condition or write something on your own. Sharing the official poster of the campaign and tagging your friends in hemophilia related posts, creating hashtags that may trend will also go a long way in spreading information about the disease. All these are in line with this year’s theme of outreach. You can in fact lend financial support by donating money to the organisations working in this sphere.

Making children aware of this condition is very important. Talk to your child’s school authorities about arranging an event or workshop on hemophilia and bleeding disorders. Arranging an art, photography or essay-writing competition can also be a good idea to celebrate the day among kids. Don’t forget to share photos of whatever even you are pa part of, on your social media handles.

What are bleeding disorders?

Bleeding disorders are basically a group of conditions that occurs when the clotting function of your blood is impaired. Normally, when a person gets injured and starts bleeding, his blood platelets form a plug in the injured area soon. Then the clotting factors I to X) in the blood interact and form a clot to facilitate healing. The clots are responsible for the bleeding to stop. There are various types of blood disorders including hemophilia, von Willebrand Disease, Glanzmann Disease, etc.

Hemophilia is a genetic disorder that occurs due to the lack of clotting factors in the blood which results in excessive bleeding even if you have got a mild injury. Its symptoms include unexplained bleeding, pain and swelling in the joints, nosebleed, deep bruises, and blood in the urine. Von Willebrand disease is a lifelong genetic disorder that occurs due to the presence of an abnormal gene controlling von Willebrand factor (a protein that helps in blood-clotting). Having a family history of this condition is the only risk factor of getting von Willebrand disease. If you have this condition, your children are at a 50 per cent higher risk of developing it. Also known as Glanzmann s thrombasthenia, Glanzmann disease is a bleeding disorder present at birth. It occurs due to the unavailability of a protein called glycoprotein IIb/IIIa. This protein is found on the surface of blood platelets. Lack of it can stop your platelets from sticking together at the area of injury.

World Hemophilia Day 2020: Importance, theme and significance

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World Hemophilia Day 2020: Importance, theme and significance

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