World Hemophilia Day: “Access For All”

World Hemophilia Day celebrated on Apri 17 every year by the World Federation of Haemophilia (WHF) improves awareness of hemophilia and other inherited bleeding disorders

Highlights:

Every year on April 17, World Haemophilia Day is recognized to increase awareness of hemophilia
Hemophilia is a rare, inherited hemorrhagic disorder leading to an abnormality in blood clotting
This year’s theme is a call to emphasize the availability of effective treatment care to all the persons affected with hemophilia

World Hemophilia Day 2023 is observed on Monday, 17th April each year to raise awareness about hemophilia conditions and recognize the work of people working as volunteers in this field. This day is celebrated on a global scale in honor of Frank Schnabel, founder of the World Federation of Haemophilia (WFH) ().

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‘World Hemophilia Day 2023 calls for improved access to treatment care with an emphasis on the control and prevention of bleeds for all people with bleeding disorders (PWBDs)’

History of World Haemophilia Day

World Haemophilia Day was first celebrated on the 17th of April, 1989. Haemophilia wasn't discovered until the 10th century when people started paying attention to the disproportionate number of male deaths from seemingly small accidents. This condition was referred to as abulcasis at the time.

However, this could not be treated owing to technological constraints. An anticoagulant was commonly used to treat a disease that was rampant among royal families at the time; however, the anticoagulant thins the blood and worsens the condition.

In 1803, Dr. John Conrad Otto of Philadelphia began researching "bleeders," who eventually concluded that the disease was passed down from mothers to sons. In 1937, hemophilia was classified as a type A or B genetic disorder. However, effective treatment had yet to be developed up to that point.

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What is Hemophilia?

Hemophilia is a rare severe, inherited hemorrhagic disorder, hemophilia is caused by the malfunction of factors required for blood clotting such as VIII and factor IX protein, leading to abnormal bleeding.

Although people of all races and ethnicities can be diagnosed with hemophilia, men are more affected. This is because the inheritance is linked to the X chromosome and there is more chance that the mother of haemophilia affected boy will also carry the disease trait. Hence, hemophilia is more common in males, even though it can affect females causing difficulties with menstruation and childbirth.

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Fast Facts About This Rare Blood Disease: Hemophilia

There are three different types of hemophilia: hemophilia A, B, and C. It is determined by the clotting factor the person is deficient in.
The more deficient in the clotting factor a person is, the more severe their hemophilia will be.
There is no cure for hemophilia but with preventative treatment, people can live normal, healthy lives.
Hemophilia C is considered less serious than A and B, and bleeds tend to occur following surgical or dental procedures. People with hemophilia C do not need regular clotting factor IVs.
Hemophilia A and B are carried on the X chromosome so affect boys more than girls, but females can be carriers of the disease. Hemophilia C affects males and females equally.
The disease is usually detected early in life, with severe cases usually diagnosed within a month and mild cases within the infant’s first 18 months.
Complications from hemophilia include joint pain, arthritis, heart disease, kidney disease, and cranial hemorrhaging.

Quiz on Bleeding Disorders
Bleeding disorder is a rare condition that impairs how the body regulates blood coagulation. In case of an injury, bleeding can occur in the organ internally or externally. Under normal circumstances, the blood vessels constrict to reduce the blood flow, and a clot is formed with the help of platelets and coagulation factors present in the blood. The clotting process is impaired in people with bleeding disorders ().

There are 10 questions on ‘Bleeding Disorders’ in this quiz that will explore the depth of your knowledge and provide answers to the following:

Life span of a red blood cell ()
Symptoms of Hemophilia ()
Hemophilia and Gender ()
Complications of Hemophilia ()
Diagnosis of bleeding disorders ()

Importance of World Haemophilia Day

The number of people affected by hemophilia seems to rising throughout the world. A recent analysis showed that around 11.25 lakh men are suffering from this inherited bleeding condition. Even with a such rate of incidence, only 15% of the affected people have access to treatment.

Lack of knowledge about this uncommon but severe ailment is only causing a delay in diagnosis and treatment. Hence, it is important to create awareness about this condition through various campaigns. World Hemophilia Day provides such opportunities.

It also helps raise funds that go into researching this condition. As a result, we can learn how to manage it better. World Hemophilia Day makes it possible for people living with this condition to connect and enables the rest of the world to show support.

This year being its 31st anniversary, most of the activities focus on encouraging the people to push the government and policymakers to create better treatment, prevention, and control of bleeds in persons suffering from bleeding disorders.

Theme For World Hemophilia Day 2023

World Hemophilia Day 2023 Theme is "Access for All: Prevention of Bleeds as the Global Standard of Care”, urges local authorities and healthcare policymakers to highlight the prevention, protection, and availability of effective treatment care to all the persons affected by hemophilia ().
This means the implementation of home-based treatment as well as a prophylactic treatment to help those individuals have a better quality of life.

How to Raise Awareness About Hemophilia

To join the conversation on social media, use the hashtags #WorldHemophiliaDay #WHD2023 #LightItUpRed. Download our World Hemophilia Day Facebook banner or Facebook frame here (click on “Social media tools”) and light yourself up red.

Wear something red at home and share a selfie on social media. Challenge your co-workers or schoolmates to post a picture of themselves wearing red for the day - or post a picture collage of everyone in your organization wearing red. Post pictures of landmarks you see lit up in red on social media ().

Like, share, and retweet WFH Hemophilia Day-related posts on social media. Share the World Hemophilia Day official poster and resources on your website or through social media.

References:

World Federation of Hemophilia. Everything you need for World Hemophilia Day 2023 - (https://wfh.org/article/everything-you-need-for-world-hemophilia-day-2023/)
National Hemophilia Foundation - (https://www.hemophilia.org/bleeding-disorders-a-z/types/hemophilia-a)
Haemophilia Foundation Australia. World Hemophilia Day 2023 - (https://www.haemophilia.org.au/events-and-conferences/event-listing/world-haemophilia-day-2023)

Source-Medindia